The Buckles Family

First of all, we would like to thank everyone for the beautiful Christmas wishes you sent and for coming to our defense for the guestbook posts from our "friend".  This person, whose name is Meghan, has apologized both on our guestbook and in an e-mail sent to us.   We feel like she is being sincere, and we also feel sad about the situation she is trying to deal with.  Someone very close to her was paralyzed in an accident, and they have chosen to deal with it on their own and not ask for any help.  Meghan disagrees with us asking for help.  We feel like she has a lot of anger for what has happened, and it was then directed at us (well, mostly me).  We, too, struggled for the first few years without asking for any help.  We finally got to a point where we knew we couldn't do it on our own, and we had to ask for help, not for ourselves, but for our children.  We felt like it was the most unselfish thing we could have done, because in our eyes letting our pride get in the way was preventing our children from having the equipment and services they needed to have a better life.  Asking for help is probably one of the most difficult things we have ever done, only to be topped by handing our children off to anesthesiologists for each surgery.  There is nothing wrong with asking for help when you really need it, and we have found that it is a blessing to be able to help others.  A friend of mine told me before having Taylor that there is no award for not having an epidural during childbirth (which I found out when I had Erin and Jade).  Likewise, there is no award for struggling through a difficult situation without asking for help.  I hope Meghan and the people close to her decide to ask for help someday, or even better, I hope that someone just offers it and blesses them with something wonderful.  Meghan, we forgive you,  and we truly hope that the anger and frustration you are feeling subside sometime soon.  We know that anger, we know that frustration, and we know the helpless feeling of wanting to make it better but you can’t.  If there is any way that we can help, please let us know.  

Now, let us move on.  A new year approaches, and with it come new beginnings.

We had a wonderful Christmas and everyone was very excited about their gifts.  We have far too many people to thank, but I will do my best here quickly.  First and foremost, we want to thank our families.  We would also like to thank:  The Riley family, the Westmiller family, Mrs. Amanda, Mrs. Lisa, Ms. Catherine, Julia, Beth, Katelyn, Bill, Jonathan, Marianne and the Ronald McDonald House, the Mirmiran family, WPER, RTI, Children's National Medical Center, Rosner Toyota of Stafford, the Semper Fi Injured Marine Fund, the Marine Corps Law Enforcement Foundation, K.O.B. Builders, and our very special Secret Santa who showed us that there really is a Santa Claus.  We also want to thank those of you who have so graciously and generously donated your time, gifts, and money to help our family.  We could never thank you enough for what you have done for us.  We would like to thank the many, many wonderful people who check on our family each day and truly care about how we are doing.  It means the world to us!!  We are anxiously looking forward to the new year, and with it will come the preparations for Erin's service dog.  We will be seeing Miss Kyria and SOLOMON very soon, and we can't wait for each visit with them.  Hopefully we will be making a trip up to West Virginia soon as well to visit with the special women who are training these amazing dogs.  During that trip we will also be able to visit with two amazing families: the Meeks and the Rileys.  It should prove to be a very exciting adventure.

O.K., I will have to save the rest of the update for another time.  I need to go help Kevin clean up the house.  We hope everyone had an outstanding day yesterday, and we hope you have a great weekend.  Please take care!

Merry Christmas everyone!!  We hope you are all having a wonderful day, spending time with loved ones and relaxing.  We are absolutely blessed this holiday season, and we want to say thank you to the many people who have been so amazing over the past year.  We would not be where we are today without the help of so many, and we want you all to know how much we appreciate your kindness.  There are really no words to express our gratitude.  We are filled with joy today and everyday for the blessing of having our children in our lives.  They are all true miracles!

As Kevin mentioned earlier, I will try to update within the next few days to fill everyone in on our recent adventures.  We have been extremely busy this month, and I apologize for not updating more.  As for today, I will spend the day with our family, basking in the love of our beautiful children.  Please have a safe and blessed day.

Lots of love to you and yours!
The Buckles Family

  Happy Holidays everyone, and we apologize again for not posting for quite awhile.  A lot of things have been going on around here, so with my limited vocabulary and without using military acronyms, I’ll try my best to bring everyone up to speed.  First of all, we’d like to thank everyone who has stopped by and checked in on us.  Melissa will post later this week and bring everyone up to speed about the girls and our visit to Children’s for the Spina Bifida Clinic.   I was able to bring some of the Marines from my unit up to visit Children’s Hospital in Washington, DC.  I’d like to thank Grandma Terry and her staff in Volunteer Services for making it happen at the last minute.  Also, Ms. Tara in the NICU, you really had a tremendous impact on some of the Marines.  They were able to see things that most NICU nurses won’t experience in their career. 
As you all know, I’ve refrained from posting on the website and have left it solely up to Melissa, unless one of the kids are in the hospital or I’m fed up with someone leaving disrespectful messages in our guestbook.  Well, none of the kids are in the hospital, even though KJ is still recovering from his broken thumb. 

We have been removing the posts as quickly as possible when they’ve been leaving them.  I realize that by having this website, that we open ourselves up to individuals who completely misinterpret everything that we post.  They suggest that Melissa should get a job, or we’re begging for money.  Yes, we do have a donations page, but with my salary it would be impossible for us to make ends meet.   There are many things that we would like to give our children, not toys or material things, but what we worry about are power wheelchairs, chairlifts, the right equipment to do therapy at home with.  And if we can throw in McDonald’s every now and then, we do. 

Now our “Friend”, who visits our site thinks we should be self sufficient  and  shouldn’t have had our children if we couldn’t afford to take care of them.  Well, it wasn’t planned for Taylor to have a tumor at the base of her spine or to have conjoined twins.  Luckily, there are people out there who are willing to help without any strings attached.  The Marine Corps Law Enforcement Foundation and the Injured Marine Semper Fi Fund have stepped forward to help out our family tremendously.  We are eternally grateful for all you have done for us.

For some time now, I have been pretty straight forward about how I feel about our “Friend” and the cowardly things that they have to say.  I’ve invited them numerous times to email us directly so we could discuss the issues they have.  But, like any hate organization, they find different things to hide behind, theirs just happens to be the internet.  We’ve had numerous death threats on our family since people found out about the girls, so one more confused person doesn’t frighten me.  Trust me when I say, after everything that we’ve been through, I firmly know who’s taking care of us.  So without further delay, I would like for everyone to see what we’ve been dealing with over the last few months, and since it’s Christmas, there’s only one thing that I’d like.  I’m sure that there’s someone out there who knows someone who could find out a name or number of my “Friend” from their IP address.  I would love to send them a card for the holidays.  :-)

We have made a habit of saving them, so here they are:

wow:
wow that was a quick removal of my post.....damn your good. Way to teach your kids......have more kids then you can afford and then beg for money and attention.   
14 minutes ago
64.12.116.100

hmmmmmmmmmm:
let me count the times money, renovations, etc were mentioned. not about race, it is about doing enough to support your family and not beg total strangers for help   
51 minutes ago
205.188.116.x
   
wow 3 whole days:
with no whining   
2 hours ago
205.188.116.x
    [Delete Comment]

none of your buiness:
"For anyone who would like to donate money to our family to help cover the costs of: modifying our home to make it accessible for Erin, driving to and from many doctors appointments and physical therapy, staying at the Ronald McDonald House every few weeks for two weeks at a time, and the many other costs that we are unable to cover. We struggle each and every day with these issues. We just want to provide all of our children with the best care possible and the ability to be independent in their own home. We could never thank you enough for any donation you choose to give. Thank you from the bottom of our hearts!!" hmmmmm maybe we should pay for your food and your gas and electric bills too    
17 minutes ago
205.188.116.x

wow 4 years:
maybe we should all send them some $$ to renovate your house   
1 hour ago
205.188.116.x

Grow Up:
Your girls are four years oold,a nd way to old to sit in fucking high chairs. Stop treating them like baby dolls and start treating them like humans.   
1 hour ago
66.213.22.x

damn:
knew we would see another update sooon. Everyone send them your money so she doesnt have to work. boohoo for melissa   
9 hours ago
64.12.116.x

awwwww:
cute little hoodlems   
22 minutes ago
64.12.117.x

PLEASE:
give me a break, the parent was trying to make Erin feel good, doesn't mean she meant she had one of those literally. your pathetic, anything to complain about. Hmmmmm maybe we can raise some money so you can get much needed therapy   
49 minutes ago
205.188.117.x

video cute?:
no not really all that cute   
1 hour ago
76.180.163.x

Almost tax time!:
EVERYONE please send your full tax refunds tot he Buckles family so melissa can cntinue not to work and the public can continue to raise her kids.   
2 hours ago
205.188.117.x

happy:
glad Erin doent complian, her mom does it enough for the family   
3 days ago
205.188.117.x
happy:
rest assured I am very secure in my life, just amazed at how all of you are so fascinated with Melissa, a manipulatr and a user. Yes poor poor Melissa. Everyone go send them money...thats what they want!   
1 hour ago
64.12.116.x


un insured:
If all of us had health insurance like you have it would be wonderful.   
30 minutes ago
68.56.188.x


hmmmmmm:
hmmmmmmmmmmmmmmm maybe we should all send you money for Erins service dog. RIGHT!   
2 hours ago
64.12.116.x


sally:
I am sure someone here will give you the $325 for Taylors machine, I mean thats what you guys expect right?   
1 hour ago
76.180.163.x

a joke:
lol you wont post where you'll be at any given time? Do you guys really think your that important that you need to not divulge a date of surgery...yet your here on the site begging for money and help.   
26 minutes ago
64.12.116.x

your begging worked:
awwww isnt it seet your money begging worked and people bought a machine for Taylor. RIDICULOUS   
3 hours ago
64.12.117.x


yeah right:
sure the picture is cute, your not too biased.    
51 minutes ago
64.12.117.x

awwwww:
must be no heart wrenching, money worthing stories to tell. Been a while since you begged and pleaded for money. Come on we are waiting for more stories about Taylor losing use of a leg or Erin crying about not walking.   
3 hours ago
205.188.116.x
8-3-08

awwwwww:
your right they were blessed with beautiful children and yes they have challenges but so do millions of other families who arent begging for strangers money, they need to get to work and do it on their own!   
11 minutes ago
64.12.116.x
8-3-08

another one:
well at this if your other kid ends up like Erin you can beg for twice the amount of money. again get a job.   
4 hours ago
205.188.116.x
8-19-08

awwwww:
another freebie? the ramp? or did you do what every other disabled american family have to do and PAY for it? no, no that would be asking way too much.   
4 hours ago
205.188.117.x
8-22-08

awwww:
maybe I am sick of people who have children and expect others to pay for them. Alot of people have disabilities but dont keep a donate button on their homepage asking for others to pay for their needs. You had the kids then pay for them. If god forbid that means Melissa has to get a job then get a job...but wait she has the kids to use as an excuse.....PATHETIC
7 minutes ago
64.12.116.x

ahhhh maybe:
you should save that McDonalds money for all the extras you beg us to pay for. Then again what the heck maybe we should buy your kids their food too!   
1 day ago
205.188.117.x


I am sure they will be asking for college money soon enough!   
21 hours ago
76.180.163.x

awwwwwww great!:
hmmmm another fundraiser...how wonderful....get those jars for the begging ready
11 minutes ago
64.12.116.x

glad:
happy thanksgiving. glad to hear the donation link is still working. After all that is the most important part right? haha getting other peoples money so you dont have to work.
2 hours ago
64.12.117.x

blahblahblah:
wow no updates for how long? what happened...don't need us to buy your kids mcdonalds.....or a new car...or anything else.
26 minutes ago
205.188.117.x

still?:
still no updates? you dont need any money or finally sick of begging...or GASP you got a job! nah that you always have an excuse for   
47 minutes ago
76.180.163.x

must be doing ok:
they must not need more $$ for mcdonalds and shopping......the site only gets updated every 1-2 weeks now. I KNOW Melissa didnt do the right thing and get a job   
13 minutes ago
205.188.116.x
Sunday, December 21, 2008


First of all, we have stopped worrying about people such as this, because we have far too many other matters that are much more important to worry about.  Second, if this person has nothing better to do than spew hatred, I truly feel sorry for him/her.  I hope and pray that they never need any kind of help in their life, the kind of thing that you just cannot accomplish on your own no matter how hard you try, because you just may not get it.  I also hope you don’t have children of your own, because I would hate for you to teach anyone this “wonderful” philosophy of yours about never helping others.  It’s sad and pathetic that you come to our website that’s dedicated to informing people about the joys and sorrows of our children, only to write negative comments.  If you are so disturbed by the things we write, please don’t visit our site again. We have four beautiful children who have gone through more in their short lives than you will probably ever experience in a lifetime, and they always have smiles on their faces.  Every day for them is not filled with sunshine and roses, and I am not about to sugarcoat it, because that would be a disservice to them.  However, if we wrote down every single struggle we faced each day, it would be overwhelming.  We do not complain, as you think we do.  Certain days or events bring a sadness or disappointment, because we wish they would not have to go through these things.  As parents, we would gladly take this upon ourselves, but since we cannot and we don’t have the ability to fix everything, some days are difficult.  Our site has given people an insight into the lives of formerly conjoined twins who have overcome some enormous obstacles.  Most conjoined twins do not even survive, and the ones that do often have lifelong medical issues.  We are blessed beyond measure to have our children here with us today, and we do not let one day pass without giving thanks for their lives.  It is important for people to understand that these children who survive birth and separation surgery struggle through daily medical issues, whether it be issues with gaining weight, infections, loss of the use of certain limbs or organs, paralysis, brain damage, and the list goes on.  Many of these children will have a number of surgeries that could continue on to adulthood.  We do not complain about these things, but it seems that if we talk about them, people think we are complaining.  I’m sure some people are much more comfortable living in ignorance thinking that everyone should be able to take care of themselves, and not wanting to know what others go through each day.  Just because we talk about medical issues or certain things that make us sad, it does not mean that we are complaining.  It is simply a way of informing the people who care about what is happening in our lives.  Please find something more constructive to do with your time.  I would suggest volunteering somewhere.  Or perhaps you can find some help for yourself, as you seem to have your own issues to deal with. 
Well I’m done, they check our site 10-15 times a day, probably waiting for this email, so here it is.  You know I would hate to disappoint you. 
Here are the various IP addresses if anyone’s interested.  205.188.116.100,  205.188.117.100,  64.12.166.100. 
 

We would like to thank everyone for continuing to check up on our family.  It truly means a great deal to us, and we very much appreciate all the care and concern you have shown us over the years.

I spent about 45 minutes typing an update yesterday only to lose it when I tried to post.  Can you say “Frustration”?!  Oh well, after many deep breaths and a little venting to my friend Michelle (thanks for listening), I’ve decided to try again; however, this time I am typing it up in Word, just in case….

We spent last week in Baltimore at the Kennedy Krieger Institute for physical and occupational therapy for Erin and just physical therapy for Taylor.  We decided to go for just one week, because we didn’t want to take the girls out of school for longer.  It was a whirlwind visit, but we got a lot accomplished and had a great time doing it.  We were able to stay at the Ronald McDonald House again, and we are just so thankful to have such a wonderful and amazing place to go.  We want to thank everyone there for treating our family like we are a part of yours and for going above and beyond what anyone would expect.  Marianne, we could never thank you enough!  Our family just adores you and your staff.  We had fantastic dinners every night, which means so much to every family that stays there.  For those of you reading this:  if you ever have a desire to volunteer or help out in any way, see if you have a local Ronald McDonald House.  There are some outstanding opportunities to help out very appreciative families.  Also, we worked on another webisode for their website, so keep checking back for new ones.  We have done three so far, but they have only posted the first one.  Here is the website:  www.rmhbaltimore.com   Thank you to Matt, John and Marty for making the experience fairly easy and pain-free!

Erin and Taylor both did very well with their therapy.  The therapists struggled to get a contraction in Taylor’s calf muscle.  It has continued to atrophy, and we can’t seem to do anything to stop it.  We are quite worried about this, and we are hoping to have some testing done to see if the nerves to the area are even functioning.  Despite this issue, Taylor thoroughly enjoyed her therapy and worked very hard.  We did see some improvement with her walking, and we will continue to work hard at home to maintain that.  Taylor truly is the happiest patient in the gym when we are there!  We love her attitude and her willingness to try.  Way to go Taylor!!  Thank you Miss Liz, Miss Nicole and Miss Nia for all of the hard work and great ideas!

Erin really enjoyed her therapy as well.  She worked hard, as always, and showed us something we were told she would never be able to do.  We are in awe of this child, as her determination to walk far surpasses our desire for her to do the same.  Early in the week, Miss Robin had Erin in the Litegait (suspension harness) walking on the treadmill.  Now, when I say walking, what I really mean is that the therapists are walking her legs for her.  When they stopped the treadmill, Erin was suspended above it with her feet touching the ground and her knees slightly flexed.  Miss Robin asked Erin to straighten her legs.  Now, whenever a therapist makes a request such as this, I inwardly cringe, hoping and praying that Erin will be able to do it.  If she can’t do it, I don’t want it to crush her spirit.  Well, on that occasion, Erin looked at Robin, squeezed her eyes shut, balled her little hands into fists and pushed them toward the ground… and she straightened her legs a little!!  I can’t quite describe how emotional that moment was, but just know that each time Robin asked Erin to do that and Erin complied, it was multiplied ten-fold.  If she had only been able to do it once, we may have written it off as a fluke, but Erin was able to do it each and every time!  Now, I’m not sure what this means as far as her recovery, but we were told by her first neurologist that Erin would never recovery any function below the level of her injury, which is T3-T7 (mid-chest level).  We could actually see her quadriceps (thigh muscles) and glutes (butt muscles) firing.  AMAZING!!!!  Smiles and tears….  We don’t know if she will recover any more on her own, but we are so thankful that she has come this far.  We also know that she will walk one day, whether it comes from stem cell research or something else that comes along.  Erin has been quite upset lately that she can’t walk now.  Almost every day she tells us that she wishes she could walk right now, she wishes she could run and play with her sisters and friends, she wishes she could go potty like her sisters….  Well, it’s difficult to explain to a 4 year old child about waiting and working hard, but somehow she accepts it and moves on, always with a smile on her face.  We are so very proud of her!  We want to thank Miss Robin, Miss Alison, Miss Judith, Mr. Patrick, and everyone else who worked so hard to make Erin’s therapy the very best.  

Jade had fun last week playing with the therapists, her sisters, and other patients.  She makes the most of every situation she’s in, and she’s good at making people smile.  Her giggle is contagious!  We are blessed with wonderful children, that is for sure!

K.J. is still in a splint for his broken thumb.  He was in a cast for a few weeks, but they are allowing him to move it a little now.  He is doing well otherwise.  I'm sure he can't wait for Christmas break!

We have some exciting events coming up this weekend.  We will finally be having Taylor’s birthday party on Saturday.  She can’t wait!!  On Sunday we have the opportunity to visit the White House.  We are thrilled!!  We will tell you all about it next week.

We want to wish our friend Amanda a very happy birthday (yesterday)!!!!  We hope you had a wonderful day filled with lots of hugs and kisses from your girls and husband!  Happy Birthday Amanda!!

We hope you are all doing well and are having a wonderful week.  Please take care!

Lots of Love,
The Buckles Family

Happy Thanksgiving everyone!!  We hope you are all having a wonderful day surrounded by loving family and friends.  Our day has been spent enjoying our little family here in VA.  The girls helped me cook and bake, and we enjoyed an excellent dinner.  The girls didn't eat very much, but I'm sure Kevin and I made up for it!   We are so thankful for all of our family and friends who constantly support and encourage us.  We are blessed to have our children in our lives.  They are amazing and beautiful, and they make our lives complete.  They bring so much joy and love to everyone they meet.  We could not be more thankful that we were chosen to be their parents!  And of course, I am absolutely thankful to have Kevin, the love of my life, as my husband.  He is my very best friend and my rock!

Taylor is doing much better.  She did have a rough night before we went to the doctor.  She ended up coming into our room with a nosebleed in the middle of the night.  There was blood everywhere, but she wasn't concerned about herself;  Taylor was worried about the blood on her sheets!  Sweet girl!  Just as we got the nosebleed to stop, she said that her tummy was hurting.  She was standing next to our bed, and I was standing right beside her.  Kevin and I started asking her if she needed to use the bathroom, but then she said she felt a little dizzy.  I put my hands underneath her arms, because I was going to lift her onto our bed, and as soon as I did that, Taylor's eyes rolled up and she passed out.  I'm glad I was already picking her up.  As soon as I got her on the bed, Kevin and I called her name a few times and she came around.  We got her something to eat and drink and had her lie there with us until we felt like she was o.k.  She went back to sleep without any issues, but she woke up with a temperature of 103 again.  Later that day I took her to the doctor, and after examining her, he thought she just had a virus.  He did a throat culture and a urine culture to rule out strep and UTI, but he was pretty sure it was neither of those.  The doctor did say that her tonsils were very swollen, so he could easily see that she had a sore throat, but he thought it was viral.  On Wednesday morning Taylor's temperature was only 100.3, and after that first dose of Tylenol, the fever didn't return.  She seems to be feeling so much better, and we are very relieved.  We were up with her quite a bit last night for some other issues, but they were not related and are just part of what we deal with.  Jade started saying that her throat hurt yesterday, so we thought we were in for another bout with it, but she never developed a fever.  Hopefully it was just a false alarm. 

Wendy, I checked on the Paws4People site, and I'm not sure why Erin's page is not coming up.  The donations link from our site works, but you cannot see Erin's story in the private placement section.  I will contact them to find out what happened.  I do know that they are revamping their site to include the Paws4Vets section, and I believe they are putting Erin into that category since we are a military family.  I will look into it and let everyone know.

We have been absolutely blessed lately, and we would just like to say thank you to everyone who is working so hard to help our family.  We are deeply grateful, and words could never express our appreciation for all that has been done.  There are too many to thank by name, but all of you know who you are, and we want you to know that not a day goes by without us thinking about your amazing kindnesses.  Thank you from the bottom of our hearts!!!

Lots of love from our family to yours!!

We would like to wish Kevin's mother a very happy birthday!!  We love you Jean Jean and wish we could celebrate with you each year.  We all hope you had a wonderful day! 

We also want to say Happy Anniversary to my brother and sister-in-law! 

We now have some extremely sad news to share.  On Friday morning I received a phone call from another family of conjoined twins.  The Garcia family was blessed to have their baby girls for a few short months, but they earned their wings on Thursday of last week.  These precious girls fought hard to survive, but they shared one heart, and their bodies just had no more to give.  Please keep this family in your thoughts and prayers. 

It makes us sad and angry that so many families have to lose their children!  We wish there was something we could do, and it breaks our heart each time it happens.  These families become a part of our family, as we share a special bond that very few people understand.

Well, I'm not sure if any of you remember this, but last summer I wrote about a special project we were working on with the Ronald McDonald House in Baltimore.  If you go to their website, you will finally be able to see the first part of that project.  They decided to follow one family for a period of time and create "webisodes" of their joys, struggles, medical issues, and their life at the Ronald McDonald House.  Our family was chosen, and they have posted the first webisode today.  The producer and camera man are fantastic, and they did a wonderful job!  They were actually there for Erin's surgery, and I believe that will be a part of the second webisode posted.  Please check out their website at:  www.rmhbaltimore.com

Taylor has come down with something, and her temperature has been spiking up to 103.  While she has had fevers that were much higher (105), we are still not comfortable with 103.  She has been complaining that her throat is hurting, so we will be taking her in to the doctor tomorrow.  Hopefully it's not strep, but if it is we can at least get some medicine to clear it up.  She has been miserable, but the thing that upsets her the most was having to miss school today.  She is hoping against hope that she can go to school tomorrow, but we just don't see it happening.  Taylor is forever the optimist, so she will continue wishing until the end of the day!  lol!  Again, I will just enjoy this now, because I know it will not last forever.  I'll let you know what we find out at the doctor. 

We hope you all have a wonderful week.  I can't believe it's Thanksgiving already!  Please be careful if you are traveling.

Well, I finally have a second to write an update about the Basket Bingo fundraiser that occurred last week.  It was absolutely fantastic, and we all had a wonderful time!  We want to thank the three young ladies who worked so hard to plan and put it together.  Julia, Beth and Katelyn did an amazing job making sure everything was ready.  They created signs, went around to local businesses and churches for prize donations, decorated the bingo hall, and did countless other things to make the evening a complete success.  All of this from 3 sophomores in high school... AMAZING!  Even though it was raining and foggy on the evening of the fundraiser, there were quite a few people who came out to support our family.  We were absolutely overwhelmed by the outpouring of love and support from those people, many of whom we didn't even know.  Our girls had the best time EVER!  They were able to sell concessions, speak into the microphone, and they even took turns being the bingo callers.  It was so much fun to watch them, because they are usually pretty shy in public.  Erin was the one who wanted to be up on stage the entire time, and she wanted to speak into the microphone.  She was disappointed she wasn't able to do it more!  She just came out of her shell, which made the evening so much better.  Taylor loved playing bingo, and she even won!  She was ecstatic, and we couldn't believe how lucky she was.  She probably won the best basket of the evening!  We had decided that we weren't going to win (even if we really did win), but we couldn't deny Taylor the excitement of that moment.  Anyway, we would like to thank everyone who came out to support our family, the businesses, churches and people who donated money, gift certificates, and other fantastic items, and especially Julia, Beth, Katelyn and Lisa for making this all possible.  I'm not sure you truly understand the magnitude of what you have done to help us, but please know that we are deeply grateful for your hard work, determination and kind hearts!  We also want to thank the American Legion Post 290 for donating the use of the bingo hall.  Your generosity humbles us. 

Our friends, Michelle, Justin and Katelyn (Katelyn's Quest), have continued to help us raise money for Erin's service dog.  They are an outstanding family, and we are truly blessed to have them as our friends.  We love hanging out with you, and we all adore Katelyn!  Thank you to all of you for your friendship and constant support! 

Here is an update we received from Kyria, who is the Executive Director of paws4people in West Virginia, about SOLOMON.  SOLOMON is the dog they are hoping will be Erin's one day.  He is at the top of his class in training, and he is far ahead of the other dogs.  He still has a ways to go before they can confirm that he will be going to Erin, but everyone has high hopes.  We love getting these updates, because it let's us know just how well he is doing.  Erin knows that it is possible she may not get SOLOMON, but she loves him none-the-less.  Anyway, here is the letter from Kyria:

"I just wanted to update you on little SOLOMON.  I have an upcoming presentation in my Disabilities & the Family class, for which I am going to use paws4people (surprise!).  They, of course, asked me to do a dog demo.  So, I thought this would be a good time to get some practice for SOLOMON.  The presentation is the 21, so I am taking him out for a few days each week until then...and then I will be in habit so probably after then too!

Well, last week I picked him up and we went straight to cheerleading practice for the team I coached.  They were all 6-8 years old, oh my.  I knew this would be a big test for him.  He stayed on a down stay (with little breaks of attention from me) in the corner for the first hour.  He very quickly slept through  the clapping, screaming, and music.  Then I let the girls sit in a circle and told them to sit still and let him come to them.  Without any direction, he went one to one and sniffed each of them.  Some he really liked and they got some kisses!  Then we did a demo...and as you can imagine the girls got less and less quiet.  I let them get rowdy to see how he'd do.  Even as the circle closed in around him and he had 20 arms around his neck, his ears were perky and he was spinning his head to try to kiss everyone!  HE LOVED THE KIDS!  I was so happy.

Friday he went to class with me and slept beautifully through my really long 3 hours class.  Then I took him on the PRT, which is our campus transport system.  (Think of the metro but small individual cars.)  COLT never really got to like the PRT, so I was kind of nervous.  He was a little confused about how to follow me through the turnstyles, but it only took one try!  On the train car, he got on and curled right up at my feet, he was PERFECT.  Like he goes on it everyday, no fear at all.  I was soooooo happy.  Then when we got downtown (much busier part of campus than where my class was) he got a litttttle more excited because there were literally thousands of people everywhere.  This is the only time I had some trouble with him pulling, because Cindy H. (his primary inmate trainer) has worked with him a lot and he's heeling almost perfectly.  This was a little too exciting though, so we took lots of breaks to sit and watch.  We sat in the MountainLair (student union) for a while where he just slept again...he was only excited walking in the crowds, so I'll make sure to do that a lot more."

Thank you Kyria for sending us updates.  We can't wait to see you all again!

We hope the rest of your week goes well.  Thanks for stopping by!

First of all, we would like to ask you to keep another wonderful family in your thoughts and prayers.  Vanessa and Jason Delgado gave birth to beautiful twin girls, Melody Joy and Madison Hope, last week on November 11th.  These precious babies were conjoined in a way that was similar to Erin and Jade, except they shared one heart.  They lived for about an hour, wrapped in the loving arms of their parents, before earning their angel wings.  This family has shown tremendous grace and strength throughout their journey, and they truly need and deserve to be lifted up by all.  Please take a moment to visit their website:  http://goodtimesdelgadostyle.blogspot.com/ .  Each time I read one of their posts, I have tears streaming down my face.  They were able to have a photographer with them during delivery, and she has put together many of the pictures to make a video.  It is beautiful and moving.  Please take some time to watch that as well:  http://mlakephotography.blogspot.com/2008/11/we-remember-madison-melody-delgado-nov.html 

We want to let you know about a new special airing tonight about conjoined twins on the Discovery Channel.  It is called "Extreme Bodies: Conjoined Twins".  There are two sets of twins, Lori and Reba Shappell (sp?) and Krista and Tatiana Hogan, who are joined at the head.  Lori and Reba are adults while Krista and Tatiana are now two years old.  Erin and Jade will also be a part of this special, but I'm not sure how much they will be on.  We had a film crew with us this summer when we met up with the Carlsens and the Fitterers in North Dakota, and they were also there the day of Erin's surgery.  Suzy Fitterer told me she was informed that they were not in the U.S. version, but they will be in the longer European version of the show.  Hopefully we can get a copy of that.  We'll see.  Anyway, it should be a great special, and we can't wait to see it.  The episode airs tonight at 10 p.m. Eastern Time.  Let us know if you watch it and what you think.

Well, K.J. fractured his thumb last week playing basketball.  We're not sure yet how bad the break is, but he will go in tomorrow to find out.  He has been wearing a splint since Thursday, but he will have a cast put on during his appointment tomorrow.  It is his right thumb, so he struggles with a few things since he is right handed.  We hope it heals quickly! 

Taylor had a big disappointment this weekend.  For the second time, her birthday party had to be postponed.  We had scheduled a pool party for her on Saturday, and when we got up Saturday morning, the weather was terrible.  The pool we go to has a bubble over it during the winter, so it is not necessarily a sound structure.  We were under a tornado watch and there was an 80% chance of thunderstorms during the time of her party.  After calling the pool, we were given the option of rescheduling at no cost or we could chance it and have the party.  If we decided to have the party, even if we were only there for 5 minutes and there was thunder or lightning, the pool would have been shut down and we would not have been able to reschedule.  We would have lost our money and Taylor would not have had a party.  We decided to reschedule, much to Taylor's sadness.  After calling the parents who had RSVPed, the weather cleared up a little.  We did get some rain, but we never did get any thunderstorms.  Taylor kept asking why we had to reschedule, and while we tried to explain it to her, it was difficult to understand because the weather was no longer bad.  We made the best decision we could given the information we had.  We still felt terrible, and I hope we can reschedule it for sometime soon. 

We hope you all have a wonderful week.  I'm still working on the photo issue.  We'll let you know as soon as we have a solution. 

First of all, we would like to say "Happy Birthday" to all of the Marines and their families.  Today is the 233rd birthday of the Marine Corps.  We also want to honor and remember all of our service members, past and present, for their bravery and sacrifices in serving our country.  Tomorrow, as many enjoy their day off, please think about these men and women, as well as their families, who have given so much for all of us.

For those of you who live in the area, I have an exciting event for you to attend!  A very special young women named Julia and her fantastic friends have worked very hard to plan an evening of Basket Bingo.  The money raised from this event will go towards helping to pay for Erin's service dog.  Julia and her friends (and many others) have worked very hard to put together many themed baskets full of awesome prizes!  It will be a very special evening, and really, who can pass up a good game of bingo?!  Here is the important information for those of you who enjoy hanging out with great people with the possibility of winning exciting prizes: 
DATE:    Thursday, November 13, 2008
TIME:     Doors open at 6:30 and Bingo begins at 7:00 p.m.
PLACE:  American Legion Building  1204 American Legion Rd., Stafford, VA
COST:    $10.00 in advance and $15.00 at the door
**Advance tickets can be reserved by e-mailing the names and # of tickets to ctcstudents@yahoo.com by November 12th.

Don't forget to bring money for dinner, snacks and raffle tickets.

O.k., so now I have an amusing story about our weekend.  Sometimes after dinner, as we're waiting for the girls (usually Erin) to finish drinking their milk, we get into funny or interesting conversations.  I'm not sure how our conversation took this turn on Sunday, but Kevin started talking about doing the worm.  For those of you who were kids in the 80's, you must remember that breakdancing move where a person lies on the floor and moves their body, well, like a worm.  For some reason, probably because I was good at the butterfly (swimming stroke), I could actually do the worm.  Believe me, it was the ONLY breakdancing move I could do, but at the time I thought I was pretty cool for being able to do it!  Anyway, when Kevin brought it up, he said, "you can do the worm; let's see it!"  I started laughing, because, while my mind knew I could do the move, I wasn't sure my body could still do it.  I've never been one to put myself out there in any way where I could embarrass myself, but our family began chanting, "Worm, Worm, Worm, Worm!", so I had to do it.  Kevin said he would do it with me, so we both got down on the floor while K.J. and the girls waited, not knowing what to expect.  After laughing at myself, not sure how to even start, Kevin counted down.... and away I went!  Amidst the cheers, excitement, and a second go-round, I realized that I may very well be sore from my little "performances".  Oh well, it was definitely worth it to amuse my family.  And just so you know, I did wake up this morning a little bit sore in areas I forgot I had!

We hope you have a wonderful week!  Please remember all of our veterans tomorrow, as well as the many who have paid the ultimate price for the freedoms we enjoy each day.

Lots of love!

The dawn of a new day brings with it a promise of something much greater than ourselves!  Our country has spoken and each voice was heard, each vote was counted.  We are thrilled and absolutely excited that Barack Obama was voted in as the next President of the United States.  He has a tremendous amount of difficult work ahead of him, but I believe that he has the ability to bring our country together and put us on the right track to recovery.  Congratulations to the Obama family!  We all witnessed a historic day, a historic election, that is being celebrated around the world.  Thank you to everyone who took the time to vote yesterday!

I forgot to tell you about getting our flu shots on Monday while we were at the hospital.  The girls each had a different reaction to the news that we were going to get them.  Taylor put on the brave face and said she wasn't scared at all.  Jade immediately began to worry that it was going to hurt and said she didn't want to get one.  Erin scoffed at both of them and said she wouldn't feel hers anyway (I'm glad there are some positive aspects in her eyes).  As we were waiting in line, Jade wanted to be held.  Erin and Taylor seemed absolutely fine.  I decided to go first to show them that there was nothing to it, and while they seemed impressed that I didn't even flinch, Jade grew more upset by the second.  Taylor went next, and as soon as she sat down in the chair, she tried to maintain her cool, calm and collected attitude; however, a look of worry did appear on her face.  Of course, it took the man quite a while to prepare, because he decided to get everyone else's shots ready before giving Taylor hers.  This made things a little more agonizing for her, with more time to think about how it might feel.  She still did a great job, but she wasn't quite as calm as she had been at the beginning.  Erin and Jade went at the same time, Jade sitting on my lap while Kevin took Erin.  Jade had tears streaming down her face even before she sat down on my lap.  She wasn't hysterical, just silently crying.  She and Erin received their shots in their thighs, and I couldn't get Jade to relax her muscle.  I tried to explain that it would hurt less if she was relaxed, but that certainly did not make a difference.  She made it through and did not take long to recover, while Erin came over bragging that she did not feel a thing.  When I said that I was actually sad that she didn't feel it at all, she said, "well, I did feel it, but it didn't hurt."  I don't know if she said it to try to make me happy or if that was really the case.  As we were leaving the hospital, Taylor started to really complain about the pain in her arm while Jade said she was fine.  These girls are too funny.  This morning, Jade said her other leg hurts now.  Gotta love 'em!

We hope you all have a wonderful day! 

xoxoxoxoxoxo

Please go out and vote today.  It is our right and responsibility to cast our ballots in this historic election.  There is still time.  Please don't leave it to everyone else, let your voice be heard! 

I took Taylor with me this morning to vote.  I wanted her to be a part of this most amazing process, and I wanted her to witness history in the making.  They discussed the candidates in school and had their own voting process, so she already knew what to do.  She and I read the ballot together, and I felt so proud to have her with me.  We didn't have to wait in line, because we went between the busy times.  We live in a community full of commuters, so I'm sure it is extremely busy right now (at least I hope it is).  Please take the time to vote.  I can't articulate just how important it is, but know that your vote does count.

We had a great weekend.  The girls had a fantastic time trick or treating!  Erin wanted to be done before her sisters, and I was a little worried about why she wanted to stop.  I didn't know if something made her sad/upset or if all of the comments about her wheelchair got to her.  Kevin took her home while Taylor and Jade and I continued on to a few more houses.  When we got home, we walked in to see Erin sitting in the middle of the family room with her candy spread around her in a big circle.  Kevin said she wanted to quit early so she could eat her candy!  Funny girl!

Taylor had her 7 year well child check-up yesterday.  She now weighs 48 lbs 2 oz and is 4 feet and 3/4 inches tall.  She actually weighs less than she did last year at this time, but she was still coming off of the steroids from her surgery.  She is doing well, but she has been getting this strange rash over the past two weeks.  It could be from a plethora of causes, so we have to wait another 4 weeks before any more testing will be done.  They did a strep test yesterday, just to rule that out.  Hopefully it will resolve itself soon. 

I'll post more soon.  Again, if you haven't taken the time out to vote today, please go out and do that now.  The polls are open until 7 here in VA, and some are open until 8 in other states.  As long as you are in line at the time that they close, you will be allowed to vote.  The next time I write, we will have a new president!  How exciting!

Happy Halloween!!  Our girls were so excited this morning when I woke them up saying the same thing.  They can't wait to get dressed up in their costumes to go trick or treating tonight.  Their school does not allow costumes to be worn today, so instead it is orange day.  They all have an orange shirt to wear just for the occasion.  Taylor had to bring an orange snack to share with her class, and she chose to bring carrots.  I figured that would balance out all of the candy that everyone else will bring, plus we brought cupcakes yesterday.  I'm sure they will all have a great day! 

I wanted to tell you about the song Jade kept singing to Taylor yesterday, other than "Happy Birthday".  Throughout the day she would sing, "For she's a good jolly, for she's a good jolly, for she's a good jolly, and we can play outside."  This was sung to the tune of "For He's a Jolly Good Fellow".  It was so funny, and it was all I could do not to laugh each time she was singing it.  I tried to teach her the correct words last month, but she likes these better, so I just leave it alone and enjoy the song. 

I just want to take a moment to thank 3 very special women for being such good friends to me.  Michelle, Tanya and Amanda, you are all the best, and I truly appreciate your constant support and friendship.  Thank you for being there for me and my family and for caring about us all.  Sending big hugs your way!

We hope you all have a fun and very safe Halloween!  I know many of you are anxiously awaiting new photos, but we have run out of room on our website, so we are just trying to figure out what to do.  We'll let you know when we figure it out.  Take Care!!

Today is our sweet daughter, Taylor's, birthday.  She is an absolute joy to us, which is why we chose that for her middle name.  She brings a smile to everyone's face, and people just tend to fall in love with her after they meet her.  We are so proud of how she has handled the challenges she is faced with daily, and we know that her positive attitude will take her far.  Taylor, we love you dearly, and we want to wish you the happiest of birthdays!!  We can't believe you are 7 years old already!  It seems like just yesterday that you decided you were ready to be born (two weeks early).  You have brought so much happiness to our lives, and we are so thankful each and every day that we were chosen to be your parents.  Happy Birthday Sweet Girl!

Taylor had so much fun in school today.  She got to wear a special birthday hat, and we brought cupcakes into her classroom this afternoon to share.  Everyone sang "Happy Birthday" to her, and she was just beaming.  After school she opened her gift from Katelyn (of Katelyn's Quest), and she was absolutely excited to get a new Webkinz.  Thank you Katelyn!!  I then took her to PetSmart to pick out some new fish for her fish tank, courtesy of Jean Jean (her grandma).  She was thrilled and couldn't wait to get them into her tank.  Thank you Jean Jean!  We had her favorite dinner, and then we put 7 candles in 7 cupcakes so we could sing to her.  She loved it!  After dinner she opened her gifts from my parents and my brother and S.I.L.  Way too much excitement for one evening.  She loved everything!  Thankfully she had already opened her gifts from our friends, the Rileys, so she wasn't completely overwhelmed.  Thank you Amanda, Bryan, Makayla and Madison for everything, including the tickets to see "High School Musical 3" last weekend!  It was so much fun, and we absolutely appreciate everything you have done for our family!  I think Taylor was exhausted by the end of the evening, but she really did have a great birthday!

Erin and Jade had a Fall party today in their classroom as well, so I spent all afternoon at school.  It was a great deal of fun, with food, singing, arts and crafts, and playing outside.  The girls had a great time with their friends, and they were especially excited that they were able to wear their Halloween costumes.  Jade chose to be a princess, and Erin was a fairy princess.  Jade told Erin that there really is no such thing as a fairy princess, and Erin promptly told her that SHE believes in fairies (so there).  No, she didn't really say the last part, but it seemed appropriate!  Anyway, I love being in their classrooms, and I'm so glad we have these opportunities.  Jade and Erin loved being able to go into Taylor's classroom to share the cupcakes, and I know they can't wait to be in first grade as well. 

I have so much more to write about.  I was pretty frustrated about losing my entire post yesterday, but I guess that just teaches me that I need to save as I go (which I am doing this evening).  I will try to find time soon to tell you about our evening at Children's Hospital the other night.  We were involved in a reception for an amazing couple who issued the Goldberg Challenge and helped raise $55 million.  This was after they donated $25 million of their own money!  Wow!!  Anyway, I have much to tell concerning that. 

Also, I see our guestbook has become a sounding board for political commentary.  I opened the door for that, and I'm actually glad to see such passionate interest in this election.  My wish is that everyone would take the time to do some research before forming an opinion.  There is a great deal of information being thrown out there right now about each candidate, most of which is slanted one way or the other.  Please search for the truth, which is often somewhere in the middle. 

"Obama's record in Illinois represents that of a pragmatic progressive, who pushed for moderate reforms and opposed right-wing legislation. In the IL legislature, voting "present" is the equivalent of voting "no" because a majority of "yes" votes are required for passage. Many IL legislators use the "present" vote as an evasion on an unpopular choice, so that they can avoid being targeted for voting "no."  In 1997, Obama voted against SB 230, which would have turned doctors into felons by banning so-called partial-birth abortion, & against a 2000 bill banning state funding. Although these bills included an exception to save the life of the mother, they didn't include anything about abortions necessary to protect the health of the mother. The legislation defined a fetus as a person, & could have criminalized virtually all abortion."
Source: The Improbable Quest, by John K. Wilson, p.147-148 Oct 30, 2007

I am not stating my opinion about abortion here, but it is important to note that Senator Obama is not the one who invented abortion, nor is he the one who is pushing abortion.  He is simply concerned for the health of the mothers and wants to make sure their rights are protected as well.  There are cases where pregnancy puts the life of a mother in grave danger.  While I am also not going to discuss the value of one life over another, would you have her die and leave her family motherless?  There are far too many factors involved with the abortion issue to take a solid stance.  To overturn Roe vs. Wade would take us back to a time when women were getting abortions in dirty back rooms with coat hangers, sometimes just trying to save their own lives.  Mothers have a right to life as well.  Please think about all of the issues before you condemn someone. 

O.k., I truly hope everyone is having a wonderful week.  Have a great Halloween, and please stay safe! 

Well, I just spent the last 45 minutes typing an update, only to have it lost.  I will try to find time later.

We are doing well.

We had a rough night and day with Taylor.  She has some kind of intestinal virus, so she's been pretty miserable.  Hopefully she can get rid of it soon.  She was very sad to miss school today and hopes she does not have to miss it tomorrow.  Thank goodness Kevin was able to be here today again!  He was out of town for a few days, but he got back last night.  I hope it does not spread to anyone else in the family.  At first we thought it was related to her spinal cord issues, but we're fairly certain now that it's a virus.  I'll let you know how our evening goes.

If you have the opportunity, please watch a new special on Discovery Health Channel tonight about a very special family.  The Bailey family has conjoined twin girls, Emma and Taylor, who are now two.  They share a heart and are in the process of testing to see if separation is possible.  The special is called, "Two Sisters, One Heart".  We have been in contact with them for the past two years, and we feel absolutely blessed to have them in our small group of families who share an extremely special bond.  The special airs at 8 p.m. Eastern time, but please check your local listings.  I'm sure they will show it again, randomly, so you can find out about future times at www.discoveryhealth.com .

We hope you're having a wonderful week!

We had a wonderful weekend, with our family back together again.  The girls were so excited to see K.J., since we hadn't seen him in 4 weeks.  I think he had to get used to having three little girls always in his space again, but I'm sure he enjoyed the weekend.  On Sunday, we met up with the girls' preschool class at a local pumpkin patch.  It was our first time going to one, and the girls had a fantastic time.  Erin seemed a little upset initially, because we had to push her everywhere; however, she really perked up when Kevin took her out of her chair and carried her around.  There was a maze, pumpkin and face painting, a moon bounce, a straw castle (kids could climb up the straw bales), farm animals, and pony rides.  Needless to say, the girls were rushing from one thing to another, each thing better than the last.  Erin absolutely adored feeding the goats and a little black pig.  They all were able to ride the pony, and I almost melted at the smiles on their faces.  Erin was a little nervous at first, but when daddy went and helped her, she thought it was the greatest thing.  I'm going to try to set up some hippotherapy for her, which is therapy on horseback.  All three of them were able to pick out their own pumpkins, and as soon as we came home, we had to paint them immediately.  They are so funny!

Erin's temperature has been hovering around 99-100 degrees, and we're not sure what is going on.  We're don't know if something is brewing or if she is just fighting something off, but I guess we'll find out.  She does have a pretty stuffy nose, but so far she doesn't have a cough.  Her sisters are showing the same symptoms minus the mild fever.   Hopefully nothing will manifest itself.

The girls have picture day today, so I told them they had to smile their real smiles.  You know how kids sometimes do this really cheesy grin or they don't smile at all for school pictures?  I told them to think of something really funny.  Taylor is thinking of something her daddy does before bed every night, and I know she will laugh.  I can't believe how expensive school pictures are now!  We decided to only buy a package for Taylor this year.  I can't wait to see how they turn out!

Oh, I just wanted to answer a question someone had on our guestbook.  Val asked about school bus transport to and from school.  I wish that was an option for us.  Unfortunately, the girls attend a school outside of our attendance zone, which means there are no buses to pick them up.  The only one who is eligible to ride a bus is Erin because of her disability and the fact that she has an IEP.  It would be silly to have her ride the bus when I have to take her sisters.  Thank you for asking the question, Val.

We hope you're having a wonderful week!  We are now counting down to Taylor's birthday.  She reminds us every day that her birthday is quickly approaching!  I can't believe she is almost 7!  Wow!  :0)

We are back!!  We want to apologize for not posting sooner, but we've been really busy and have taken time out to be together as a family.  Kevin was out of town for three weeks, which is difficult for everyone, and he just returned home on Monday.  It is such a relief to have him home, and we're thankful that these trips are not terribly long, and we're especially thankful that he is not deployed.  I am so blessed to have Kevin as my husband, and I want him to know how much I truly love him with all of my heart!  We've been through some extremely tough times, and I'm blessed that he has been by my side each step of the way.

I'll try to get everyone caught up on the events in our household.  Last week Taylor developed a fever and was having headaches and an ear ache.  I was certain she had either a sinus infection or an ear infection, so her pediatrician said he would see her early on Thursday morning.  With the traffic in our area, we had to leave for the appointment two hours early, and we were STILL late.  After examining her, the doctor said that she didn't seem to have any type of infection but that her allergies were very bad.  Even though she was on Zyrtec, which usually does the trick, she had no relief.  He suggested some other allergy medications, and away we went.  The girls insisted on going to school that day while I tried not to collapse from sheer exhaustion. 

Over the weekend, we spent our time cleaning up and playing (and cleaning up again).  We couldn't wait for Kevin to get home -- I think I was the most excited out of everyone!  The girls didn't have school on Monday, so we hung out waiting for daddy. 

On Tuesday afternoon when we picked up the girls, Jade kept rubbing her right eye and saying it hurt.  Around dinner time, it started to have a lot of discharge, but her nose was really stuffy at the same time.  Initially I thought it might be allergies, but when the discharge turned to a yellow/green color, I knew there had to be an infection.  Her eyes were all swollen, and she had this red streak down her cheek.  I left a message for our pediatrician that evening, knowing he gets to work early in the mornings and always returns our calls immediately.  Meanwhile, Taylor was having some major issues with her bowels, so that was another big worry.  During the night, Jade just couldn't sleep, and when Kevin checked on her before leaving for work on Wednesday morning, her eye was sealed shut.  He stayed home so he could help with the girls, and while I was taking Taylor to school, he spoke to the doctor.  After hearing about our night, the doctor wanted to see Jade right away, so off we all went to the Naval Hospital again.  I wish we had a pediatrician who worked much closer to our home, but we can't imagine finding a better doctor than the one we have.  We are lucky to have him!  Anyway, he diagnosed Jade with conjunctivitis (or pinkeye), and he prescribed drops.  He wrote a prescription for more than she would need, because the chances were high that at least one other person in our house would get it.  He also prescribed some medication for Taylor, and we're hoping this helps her.  She has made it through school this week without issues on a wing and a prayer, but hopefully we'll get it under control soon.  We can't tell if this is from her tethered cord or if there is another cause.  Unfortunately we'll just have to wait and see.  After leaving the hospital, we were starving, so we stopped and got McDonald's for lunch.  When we got back to our area, we stopped to have Jade's prescription filled.  She had been such a good girl all day, especially since she must have been exhausted and wasn't feeling well, so I decided to get her a little toy.  Erin was able to go to school that day, and she was so excited.  She thought it was pretty cool to be there without Jade.

O.k., now move ahead to the next morning when Erin woke up with her left eye sealed shut and completely swollen.  I think she was really scared.  She absolutely didn't want to get the drops in her eyes, but she had no choice and was a very big girl.  Then I broke the news that she wouldn't be able to go to school, because the medicine hadn't had time to work yet.  Jade immediately jumped in and said, "Erin, that is so cool!  You'll get to have McDonald's for lunch, and you'll get a new toy at the store!"  That was so funny!!!  In her mind, that is what happens when you get pinkeye, like some standard operating procedure.  Of course, I caved in and solidified that belief.  Oh well, hopefully we'll never have to deal with this again.  I've warned everyone we've come in contact with, and I truly hope nobody else gets this.  Every time our eyes burn or itch, Kevin and I think we're getting it too. 

Last night Erin complained of having a headache, and this morning she woke up with a fever (very low-grade, just 100.4).  I have no idea what could be causing that, but Taylor had that unexplained fever last week for one evening as well.  I don' know, I guess we'll see. 

We want to wish our niece, Elizabeth, a very Happy Birthday today!!!  We all adore you, and we're very proud of you for who you are and all you do!  We hope you have a fantastic day!!  We love you!!

Oh, just one more quick story.  As I was taking Taylor to school this morning, we were driving behind a van that had one of Erin's magnets on it.  It was really cool to see, and the girls were very excited.  If you would like to see the magnets and possibly purchase one, please check them out at:  www.k2kgraphics.com   You can order them directly from their site if you would like. 

We hope you all have a wonderful weekend.  Thank you to the many who were concerned about us and took the time to write.  We are doing well and will try to do a better job of updating the site.  Sometimes we just need to take some time for us and really appreciate the amazing people in our lives.

We had a fun, but busy, weekend.  Taylor was able to attend a birthday party for one of her classmates on Saturday, and she was so excited!  That was the first birthday party she has gone to by herself, so it was a big moment for us.  It's hard to believe how quickly they grow up!  She had a great time, and she is now fully ready for her own birthday.  She wasn't able to have a birthday party last year, so we promised her that she could have one this year and invite her friends.  She said she would like to have it at the bowling alley (of course), so I will call tomorrow to book it.  She is counting down the days until she is 7.  7!!!!  I can't fathom!

Yesterday we had an evaluation at a new physical therapy center in the area.  The girls have been without therapy for a few months now, and they really need it between visits to Kennedy Krieger.  It was a small gym, but I really liked the therapist who saw Erin and Taylor.  Our friend Michelle has offered to have Jade over for playdates on afternoons when her sisters have therapy.  What a wonderful suggestion!  Also, her daughter Caitlin (sorry if I misspelled it) has decided that she would like to help her friend Erin to get a doggy.  She wants to raise money for the service dog, and she has named her mission "Caitlin's Quest".  What a fantastic little girl!  And here's the best part:  Caitlin is only 4!  Go Caitlin!  You're way too sweet!  Michelle is also brainstorming ideas for fundraisers.  Wow, I've recently made some of the best friends I could ever hope for! 

I hope everyone watches the debate tonight.  There are some very important issues, and it is crucial that we understand where our candidates stand.  Let's hope they stick to the issues and don't resort to the smear tactics that have recently sprung up like the plague.  Sorry, Carol, if all of this upsets you. 

The girls have a "Back to School Night" tomorrow, so I'm sure that will be fun.  I love going into their classrooms to see what they have been doing.  Taylor's teacher recently told me that she is one of the top two readers in her class, and she reads at a fourth or fifth grade reading level.  Way to go Taylor!  We're so proud of you! 

We hope you're having a great week!!  Oh, if you would like one of the car magnets, you can contact us, the gentleman who designed them (www.k2kgraphics.com), or Amanda Riley (info on guestbook).  They're very cute, and the money will go to Paws4People for Erin's service dog.

Sometimes I will go weeks without updating, and now you get three in one day.  You would think I just had too much time on my hands today, but I was hardly at home.  We've just had a lot going on.

So my friend, Michelle, and I have decided to start working out after we drop our daughters off at school.  Her little girl is in Erin and Jade's class.  We went to the gym at Quantico today, and just as we started doing crunches, I heard my name announced over the intercom to come down to the front desk.  Well, I immediately knew that something was wrong, and my imagination ran wild with what it could be.  I quickly went to the desk, where I was told that I had a phone call.  It was Kevin and he said that the school nurse had been trying frantically to reach me and finally called him.  She had told him that Erin was sick and in the nurses office, so I immediately called her back.  My mind was jumping to some of the things it could possibly be, related to a spinal cord injury, the worst of which is Autonomic Dysreflexia.  I called the school and spoke to Ms. Lisa (Erin's teacher) when I was put through to the nurses office.  She said that Erin wouldn't touch her lunch, looked very pale, and wouldn't respond to anyone when they spoke to her.  Erin had told her that her arms and head hurt and she didn't feel well.  At that point, I had no idea what it could be.  Erin was perfectly fine when I dropped her off for school, even eating Cheerios in the car.  While I was on my way to get her, the nurse called me back to tell me Erin's temperature was 99.6.  Hmmmm....  She also asked if I wanted her to get Jade and Taylor ready to go as well so I wouldn't have to go back to pick them up after school.  I thought that was a great idea, especially if Erin was doing as badly as they said.  She did have a few classmates out this week with some sort of stomach flu, so I thought it might be that.  When I arrived at the nurses office, Erin was back in her wheelchair looking o.k.  She wasn't acting totally normal, but there was nothing that alarmed me.  I'm really glad that they called me, because you just never know, and Kevin and I are relieved to know that they are so cautious.  She seemed to perk up as we were sitting there waiting for Taylor and actually wanted some popcorn from her backpack before too long.  I honestly think she might have been a bit hypoglycemic, because the description of what happened and how she was feeling sounded awfully familiar to me.  I tend to get hypoglycemic pretty easily, and I've observed that it seems to happen to people with spinal cord injuries more often.  I'm not sure why, it's only an observation.  Anyway, Taylor was extremely sad (to the point of tears) that she had to leave, because they were having a little party in their classroom today.  So, since Erin seemed to be doing better, I allowed Taylor to stay.  I didn't want her to miss something so fun and special.  Anyway, to make a long story a little bit shorter, Erin is still doing well now.  She IS trying to play it up a little, saying she needs to lie on Taylor's bed and wants soup for dinner (IN Taylor's bed as well).  So far, however, she really is doing o.k.  Put it this way, I'm much more concerned about her slightly stuffy nose right now.

Well, all in all, we had a good day.  I hope everyone has a wonderful weekend!!!  And yes, I just noticed that I said to have a wonderful Thursday earlier today.  Sorry!  The correction is made.  :0)

Just a quick update to let you know that I called Erin and Jade's teacher, Ms. Lisa, and she very graciously said that she would run over and give Taylor a quarter.  Oh, Thank You Ms. Lisa!!!!  Now I don't feel like such a bad mom!  You've saved the day!  :0)

O.k., my friend Amanda just sent me this link to a song that has tears streaming down my face.  It's called "I'll Walk" by Bucky Covington.  Even for those of you who don't like Country music, just listen.  www.myspace.com/buckycovington

Well, gosh darn it Joe Sixpack and Hockey Mom Sarah St. J, you Maverick!  We're with ya! *Wink*  Could you give me a specific example?  Just one?  Ha!  How many times can a person say Maverick in one evening? 

O.k., so I am feeling like a terrible mom right now.  On Fridays at school, the PTO sells bags of popcorn to the students.  Each bag costs a quarter.  I gave Taylor the money this morning in the car, but she dropped it while we were driving.  I told her I would give her another one when we got to school, but I forgot.  I remembered when we were almost home, and I'm still debating whether I should go back.  I know it sounds really silly, but I just have these visions of Taylor being really sad while her classmates eat popcorn.  Such a small thing, but I hate to let my girls down.  :0(

Here's another amusing story, and this time it's actually about Taylor.  As I was washing Jade's face last night, she opened her mouth just as the washcloth went over it, and I accidentally got soap in it.  I told them how some parents used to wash their kids' mouths out with soap if they did or said anything naughty.  Erin asked what a kid could say that was naughty, and I quickly tried to figure out how to tell them without saying the words.  In our house, we don't use the word "Stupid", and they know that's a bad word, so I said, "Well, if they said the 'S' word, they might have gotten in trouble".  Erin and Jade looked at me quizzically, and Taylor said,  "Or how about the other 'S' word"?  In disbelief, I slowly asked her, "What other 'S' word?", not knowing what would come out of her mouth.  I was trying to imagine where she might have heard the "other S word", already becoming a little angry at whoever said it around my daughter.  Anyway, Taylor looked at me, and with a worried look on her face (like she might get in trouble just for thinking this word), said, "You know Mommy, 'shut up'".  She almost whispered the last part, afraid that I might get upset with her for actually saying that naughty "S" word.  And all I could say, as I breathed a huge sigh of relief, was, "Oh, right, that IS the other 'S' word". 

Erin did something funny last night as well.  After their bath, she was lying on the floor while I was getting her ready for bed.  Her nose was really stuffy, and she couldn't breathe out of it.  She said, "Well, I can't go to school tomorrow, because my nose is stuffy and I don't feel well".  I had to hide my smile as I so clearly remembered doing the same thing when I was young.  A little while later, I told Erin I was going to give her some Dimatapp for her cold, and she quickly said, "No thank you, I don't need it because I'm all better", and she took a quick sniff through her nose, as if to prove her point.  Erin really dislikes the taste of Dimatapp, and I think she gets tired of taking medication.  She has meds that she takes every day, and I don't think she likes to add anything else.  Her nose was pretty stuffy again this morning, and Jade has now developed a cough.  Keep your fingers crossed that Erin does not get it.  She actually did fairly well with her last cold, but with the two before that she ended up in the hospital.  Kids with spinal cord injuries (mid-chest and up) don't have the use of their intercostal muscles, which are the muscles between the ribs.  These muscles assist in coughing, which helps to expel anything from the lungs.  When a person can't cough very well, everything settles in the lungs, causing pneumonia.  Our friend Grace keeps having issues with this very quickly after getting a cold.  It is a frightening thing, because it can happen quite fast.  Erin seems to be very strong and healthy right now, so let's just hope she fights this off without any issues with coughing. 

We want to wish my brother Mike a very Happy Birthday today!!  We love you!

Have a wonderful Friday!  Keep your heads up, and don't forget to smile! 

Wow, there is so much I could say about the debate tonight, but I will just focus on one issue that is very important to me personally.  Governor Sarah Palin keeps talking about how she will advocate for special needs children if she is in the White House.  Well, let's just look at her track record over the past year.  This information is easy to look up.

The facts here show Governor Palin cut funding for special needs kids dramatically.

Each day, we all have things happen in our lives that make us come to some sort of realization.  Sometimes they are wonderful, and sometimes they make you a little sad.  Something happened yesterday that made me realize something pretty sad about our girls.  I was watching one child get asked to go to an amusement park over the weekend, and it was at that moment that I knew not many of those invitations would ever come our way.  People will be afraid to ask Erin, because they would have no idea how to even deal with her disability, and they won't ask Jade, because they know that they are leaving Erin out.  Now, I'm sure the girls will someday have really good friends whose families will be close to ours.  Maybe at that point we will be asked to join in as a family, but until then, I'm sure those invitations will be few and far between.  This is understandable, because I would be pretty nervous about taking care of someone else's child with a disability, but it still makes me sad.  I remember going many places with friends when I was young, and I wish my girls wouldn't have to miss out on those experiences.  Don't get me wrong, even if she were asked, Erin would not be able to go with friends by herself right now anyway (because of medical issues), but someday she will be able to take care of everything herself. 

The girls were so excited tonight, because we joined many of their classmates at a local pizza place for a spirit night.  The restaurant donates part of the proceeds from the evening to the school.  They had the greatest time with their friends, and I truly enjoyed watching them.  I am starting to meet some of the other parents and teachers, and I am finally making friends in our area.  For the first few years we lived here, we spent so much time at the hospital and physical therapy that we just never had the opportunity to participate in anything.  We never met new people or made any connections.  We finally have the chance to do that now that the girls are in school.  Anyway, it was an enjoyable evening, and I'm so glad that we're able to participate in fun events like this.

We received our packet of magnets today from Amanda, and they look fantastic!  I'm excited that she did this for us!  Thank you Amanda!

Please take the time to watch the Vice Presidential debate tonight (if you are from the U.S.).  Remember, we are not just voting for a President.  If something were to ever happen, our Vice President would take over, and we need to make sure we have someone in that position who could step in and do an outstanding job.  While you are watching tonight, listen to the questions and see if each candidate answers those questions clearly, intelligently, believably, and with the best interests of our nation in mind.  This is our only opportunity to see these two together before we vote on November 4th.  Remember, if you haven't registered to vote yet, please do so.  In Virginia and D.C. the registration deadline is Monday, Oct. 6.  Check out the deadline for your state, and make sure you make time to register.

On a much funnier note, I have another story about Jade.  I'm not sure if you've noticed, but she really is our entertainer.  Ever since she was first able to talk, Jade randomly decides she wants to be called something other than her real name.  We have gone through names like:  Mark, Bob the Builder, Superman, and Kenai.  Well, this week she is Leslie.  At least she has chosen a girl's name this time!  Every time we call her "Jade", she gets this exasperated look on her face and says, "Ah, I'm LESLIE"!  She still talks about walking around with naked feet, and she loves to tell stories.  Today she keeps telling a story about her "real" parents.  Apparently, in her story, Kevin and I are not her real parents.  Her real parents are mermaids.  Erin is very quick to assure me that I am HER real mom.  Whew!  At least one of them is mine! :0)

First, I would like to apologize if I offended anyone with my post from last night.  It was not meant to offend, and I am not trying to impose my beliefs/views on anyone else.  However, I do have every right to express my opinions, just as all of you can do the same.  I don't want anyone to go into this election with some starry-eyed view of ANY of the candidates.  We need to be informed, just as THEY do.  Don't you want someone in office who can speak intelligently about the issues and who knows what they are talking about??  When I listen to people speak, I am asking myself if what they say is understandable and makes sense.  It is not often that I post anything political on our site, although I guess when I ask people to call their Senators and Congressmen to advocate for paralysis issues I am crossing that line.  The point is that this election is extremely important, and whoever you decide to vote for, please make it for the right reasons.  If you think a change is going to come with Senator John McCain, then please, by all means vote for him.  But remember, we are voting for a Vice President as well, and that person could very well become the President if something happens.  I'm sure Governor Sarah Palin is probably one of the nicest people you will ever meet.  She is beautiful, and she is a strong woman and mother.  I have nothing against her personally, and I would never say or imply that she is a bad person.  From what I have seen of her so far, however, I do not believe she would make a good Vice President.  That is my opinion, and I am not trying to tell you how you should view her.  I am looking forward to the debate this Thursday, because maybe she just had some trouble with those other interviews.  Maybe I will be completely impressed with what she has to say.  I am a very open-minded person, and I really hope that she impresses me.  We did receive an e-mail this morning from someone who was very upset with me, stating that I had no right to post my political views on our website.  I beg to differ.  Again, I am sorry if I offended you, and I'm very sorry if that makes you decide to stay away from our site, but we do have a right to post it here. 

Thank you to those of you who wanted to let us know about the stair lift.  We have looked into those, but it is not even possible for us to get one.  I posted Erin's story because I thought it was cute.  Some may have interpreted it as our way of asking for help again, but that is truly not the case.  I just wanted to share Erin's excitement for "making an invention".

The girls seem to be doing o.k. today.  Taylor's ear is hurting, and Jade is still dealing with a runny nose and cough, but it doesn't seem to be any worse.  So far so good with Erin. 

Have a great day!

First of all, we want to wish Makayla a very Happy Birthday today!!  She is a very sweet girl, and her family is working hard to help Erin to get her service dog.  Happy Birthday!

O.k., for those of you who have not seen Katie Couric's interview with Governor Sarah Palin, you need to watch this clip:  http://www.youtube.com/watch?v=L8__aXxXPVc .  Seriously?!  Please make sure you are registered to vote on November 4th.  Some states have deadlines that are quickly approaching.  You can be a part of a change for the better.  This is probably the most important election we will ever have.  Vote for Change!!!

Erin is still determined to make her invention!  :0)  Oh, and we are dealing with colds.  Jade and Taylor are the worst.  Let's just hope it doesn't hit Erin. 

Thanks for stopping by!

Last night, after carrying Erin upstairs for bed, she announced that she was going to "make an invention".  She decided that she was going to create something so we wouldn't have to carry her up or down the stairs anymore.  After telling me in great detail all about it, she also excitedly told her daddy.  She told us that she wanted to make it today.  Now, I should have known better, but I thought maybe she would forget about it; however, that was not the case.  As we were getting dressed this morning, Erin said, "Mommy, I'm going to make my invention today".  On our way home from dropping Taylor off at school, Erin was listing all of the tools and materials that she will need to make her invention.  She said, "I'll need nails and a hammer, a screwdriver and screws, wood, and ummm... let's just call it 'Dusty'".  Now, for those of you who have ever seen the show "Handy Manny" on Disney Channel, you will know that Dusty is a saw.  I said, "Do you mean a saw?", and she said, "A saw, yes, a saw!"  As soon as we got home, she began scanning the garage for everything she will need.  I told her that before we can build anything, she will need to draw up the plans.  I also told her I was pretty sure we didn't have any wood.  That didn't seem to be a deterrent, because right now both Erin and Jade are busy drawing up plans for Erin's invention to get her up and down the stairs without help.  Erin has even come up with a name for it:  the Erin 3000.  Well, this should be interesting.  What am I going to tell them when they are done?  :0)

It seems that all three girls may be coming down with a cold.  I'm really hoping this is not the case, but we'll just have to see.  I'd love to say it is allergies, but Taylor and Jade both take Zyrtec for their allergies, and Erin has never really had any.  I know it's possible for them to develop at any time, and I think allergies would be much easier on her than a cold, so let's just hope it is that.  I've been feeling kind of tired and run-down lately too, which I'm just hoping is because I haven't been getting enough sleep.  Oh, that would be so pleasant to have everyone get sick at the same time!  In a way it would be nice, so we could just knock it out and be done with it instead of passing it from one person to the next.  Keep your fingers crossed that whatever it is passes quickly.

If anyone would like to purchase one of Erin's car magnets, please send us an e-mail.  You can also contact the company directly through their website at:  www.k2kgraphics.com   Amanda will be sending us a pack of them tomorrow, so if you live in our area and would like one, please let me know.

We hope you have a wonderful week!!!  For those of you who took the time to call or e-mail your Senators yesterday, Thank you, Thank you, Thank you!!!!  Our Senators both said they will vote for it, but they have always supported it in the past as well.  I hope a few others changed their minds!

We hope everyone had a great weekend!  We got a lot done and had some fun as well.  On Saturday we were able to attend our little friend Ava's birthday party.  The girls were especially excited because it was at a bowling alley, and they have been wanting to go bowling for months (literally).  Just as we started our game, they turned the lights out, the black lights and neon lights came on, and they turned up the fun dance music to concert-like levels.  The girls thought it was the greatest thing EVER!  Not only did we get to bowl, but we got to dance the afternoon away.  What could be better than that?!    Ava is the little sister of Jackson, who was NICU buddies with Erin and Jade.  Jackson was born three weeks before our girls, and he weighed in at 2 1/2 lbs.  He was little and had a rough few months at first, but he is now almost as tall as Taylor and doing extremely well.  It was so much fun to see them again, as we became very close to Jessica and Jeremy (their parents).  Jessica and I were in the hospital together for months and suffered through the bad food, 4:30 a.m. wake-ups by the eager-beaver residents who just couldn't wait to finish their rounds, and witnessed many women coming and going from our part of the hospital, some of them with babies and some of them who suffered the greatest loss of their lives.  Jessica was actually one of the latter, as she lost Jackson's twin brother a little over a month before Jackson was born.  We're blessed to know them.

I finally have a link to the magnet.  The gentleman who is making the magnets graciously put the information up on his site.  Here it is:  http://www.k2kgraphics.com/  We want to thank Rob Wolfe for doing such a wonderful job and for being so kind!  We also want to thank Amanda Riley for EVERYTHING she has done for our family.  She is the one who came up with this idea, and she has done all of the leg-work to get it done.  She is also looking for ideas for t-shirts, so if anyone has any, please let us know.  I am definitely not a very creative person... please help!  :0) 

O.k., I am once again calling on all of you to help.  Please read the following information, and if you are of voting age, we're imploring you to make the phone calls.

Take Action Now!

Senate to Consider Reeve Paralysis Bill Today!!! Call Your Senators Right Away!

Today, Senator Tom Harkin plans to ask the Senate again to consider the Christopher and Dana Reeve Paralysis Act (CDRPA) before Congress adjourns. The House of Representatives has passed the paralysis bill twice -- first, in 2006 when the Republicans were in the majority; and, most recently, last October under the Democratic leadership of Speaker Nancy Pelosi (D-CA). The Senate Health, Education, Labor and Pensions Committee unanimously approved the paralysis bill in August, 2007. NOW, it is time for the full Senate to act!

We urgently need your help! Please call your Senators today! Call your friends and ask them to make calls also!
Please take the following action immediately:

   1. Call your Senator's office and ask to speak with the Senator's health care advisor. Your Senator's contact information can be found here or by calling the Senate switchboard at 202-224-3121.
   2. Urge them to support Senate action on the Christopher and Dana Reeve Paralysis Act.
   3. Encourage them to vote YES to bring up the Reeve paralysis bill, H.R. 1727; and ask them to vote YES to pass the Reeve paralysis bill.
   4. Tell them that the Christopher and Dana Reeve Paralysis Act supports scientific research, rehabilitation and quality of life for those living with paralysis; Explain why it is important to you, as a constituent and voter.

Your calls are extremely important and will provide your Senators with the support they need to vote for the bill!

Sudden Change-One Call Away From CDRPA!
An urgent situation has arisen in these last minutes of the 110th Congress. As you know, the Christopher and Dana Reeve Paralysis Act has been blocked by a lone Republican Senator from Oklahoma, Tom Coburn. He has given one constituent FIFTEEN different excuses for the blocks! His party is enabling this obstruction of the CDRPA, while letting several similar, unrelated bills pass. Our longtime champions Senate Majority Leader Reid (D-NV) and Senator Tom Harkin (D-IA), have noticed these contradictions and plan to take action this Monday.

They can't do it without YOU.

Please urge your Republican Senators to stand up for your rights, and for the CDRPA. A quick phone call reminding them that paralysis is not a partisan issue is all it should take. Sunday (right now!) would be the best time to call, but Monday morning will be helpful, as well.

We are one man away from government funding for care AND cure research that will benefit all those affected by paralysis. Don't let partisan games put this off another year. Please call your Republican Senators today and ask them to urge Senator Coburn to allow the Christopher and Dana Reeve Paralysis Act to pass the Senate without objection.

Your Senator's contact info is easily found by selecting your state from this pull-down menu.

Your one call WILL make a difference. The script below breaks it down word for word. Keep an eye on Senate C-SPAN Monday to see how it goes!

Your calls will probably go straight to voicemail. This makes the process even simpler. Dial your Senator's number and ask to speak to someone about bringing the Christopher and Dana Reeve Paralysis Act, Senate Bill 1183, to a vote. This will direct you to the voice mail of your Republican Senator's Health Aide. From there, the short script below is all you need.

~My name is (Insert name)

~I'm a voter from (insert town and state.)

~I'm calling to ask that Senator (insert Senator's last name) urge his colleague, Senator Tom Coburn of Oklahoma, to stop impeding the passage of the Christopher and Dana Reeve Paralysis Act, Senate Bill 1183.

~As a paralyzed citizen,(or insert your relationship to paralyzed person) I'm sure that my Senator realizes that paralysis is not a partisan issue, and wants to see passage of this bill that will lead to healthier lives for all those living with paralysis.

~Please thank Senator (insert Senator's last name) for his (or her) integrity and support.

~You can reach me at (insert phone number) or by email at (insert email address.)

~Please tell the Senator that I am grateful for his (or her) support.


The following Senators, who voted not to consider the Paralysis bill last July, MUST be contacted today and urged to support passage of the Christopher and Dana Reeve Paralysis Act:

Alabama:
Sessions (R-AL), Nay
Shelby (R-AL), Nay

Alaska:
Murkowski (R-AK), Nay
Stevens (R-AK), Nay

Arizona:
Kyl (R-AZ), Nay
McCain (R-AZ), Not Voting

Florida:
Martinez (R-FL), Nay

Georgia:
Chambliss (R-GA), Nay
Isakson (R-GA), Nay

Idaho:
Craig (R-ID), Nay
Crapo (R-ID), Nay

Indiana:
Lugar (R-IN), Nay

Iowa:
Grassley (R-IA), Nay

Kansas:
Brownback (R-KS), Nay
Roberts (R-KS), Nay

Kentucky:
Bunning (R-KY), Nay
McConnell (R-KY), Nay

Louisiana:
Vitter (R-LA), Nay

Maine:
Collins (R-ME), Nay
Snowe (R-ME), Nay

Minnesota:
Coleman (R-MN), Yea

Mississippi:
Cochran (R-MS), Nay
Wicker (R-MS), Nay

Missouri:
Bond (R-MO), Nay

Nebraska:
Hagel (R-NE), Not Voting

Nevada:
Ensign (R-NV), Not Voting

New Hampshire:
Gregg (R-NH), Nay
Sununu (R-NH), Not Voting

New Mexico:
Domenici (R-NM), Nay

North Carolina:
Burr (R-NC), Nay
Dole (R-NC), Not Voting

Ohio:
Voinovich (R-OH), Nay

Oklahoma:
Coburn (R-OK), Nay
Inhofe (R-OK), Nay

Pennsylvania:
Specter (R-PA), Nay

South Carolina:
DeMint (R-SC), Nay
Graham (R-SC), Nay

South Dakota:
Thune (R-SD), Nay

Tennessee:
Alexander (R-TN), Nay
Corker (R-TN), Nay

Texas:
Cornyn (R-TX), Nay
Hutchison (R-TX), Nay

Utah:
Bennett (R-UT), Nay
Hatch (R-UT), Nay

Wyoming:
Barrasso (R-WY), Nay
Enzi (R-WY), Nay

(see Roll Call Vote Number 189 - Vote Summary: On the Cloture Motion (Motion to Invoke Cloture on the Motion to Proceed to Consider S.3297 )

Well, our biggest news is that we were able to have our van repaired and we now have it back!!!  Wow, what a relief!  To those of you who donated money to help with the repairs, we thank you from the bottom of our hearts!  We were able to get a grant from the Navy, Marine Corps Relief Society for the majority of the cost, but the donations helped to pay for the rest.  Thank you to everyone who helped in any way.  We ended up buying a used engine, because it was the cheapest option and the only one that was feasible.  Hopefully this one will last for a long time.  We also want to thank those of you who worked hard to have a van donated to us.  Amanda B., Amanda R., Wendy and Carol, you are all amazing women, and we are very blessed to have you as our friends.  Thank you again!!!

Our Radiothon for Childen's went very well yesterday.  After dropping Taylor off at school (which she wasn't thrilled about), Erin, Jade and I went in to Children's to participate in their exciting day.  The girls love visiting everyone at the hospital, and they really enjoyed doing the arts and crafts in the atrium.  I was quite nervous, as I always am when doing any kind of public speaking, but I think it went fairly well.  When I was done speaking I thought of many things I wished I would have said, but that's the way it goes.  It's difficult when you're being interviewed, because they don't always ask the right questions for you to say what you want to say.  Anyway, I hope I was able to inspire even one person to call in to donate money to the hospital.  It's an absolutely amazing place, and we would never take our children anywhere but there.  The care we receive, the friends we have made, the level of expertise of the doctors are all priceless.  They never turn anyone away, even if you don't have insurance and cannot pay.  It costs over $2 million a day to run the hospital!  It was wonderful to see so many people willing to donate, especially with the way our economy is today.  The last I heard, the amount raised yesterday was $156,000.  That's fantastic!!!  Oh, one really cute thing about the interview:  Erin and Jade were up on stage with me, and I spoke to them ahead of time about saying something into the microphone at the end of the interview.  They both agreed, but you know how kids can be.  When it was time for them to say something, I counted down, but Jade didn't want to say it.  Erin was ready, and she kept trying to coax Jade to say it too, whispering, "come on Jade!"  As they were going back and forth about it, someone held the microphone really close to their mouths, just in case they said it quietly; however, when they decided to go, there was nothing quiet about it.  They both yelled, "We love Children's Hospital", and it was so loud it may have blown out some speakers somewhere!  It was really funny, and hopefully people thought it was cute (even though they may now have hearing problems).  Good job girls!

Erin's pressure wound has FINALLY started to heal.  It looks like it doesn't have much longer before it will be closed.  Well, I say that, but everything in our world is relative.  Remember, she got the wound in early August, after her surgery, and we are still battling that thing.  Not much longer could be a few weeks for us, but we are just happy that it is getting better and not worse.  It may have healed faster if we could have kept her completely off of her bottom, but that's not even possible with an active 4 year old.  We're just excited to start her therapy up again;  it has been far too long since she has been on her FES bike or walked in her RGO.  Now that she's back in her TLSO, we can get her walking in her RGO anytime.  This weekend sounds good to me!

Oh, I have some great news!  Our friend Amanda from West Virginia decided to have some car magnets made to help raise money for Erin's expenses and her service dog.  She just picked up the first batch this morning, and we're really excited to see them.  I'm going to upload a picture of the magnet so you can see it, and if any of you would like to buy one, please let us know.  After discussing it with Amanda, it was decided that they will sell for $6.  They have a purple butterfly on them (Erin's favorite color and she LOVES butterflies) and say, "Aspire for Erin".  Our website address is also printed across the bottom.  I think they will be really cool!  I seem to be having issues uploading the picture right now, so I'll have to work on it this evening.  Stay tuned!  Anyway, if you'd like to purchase a car magnet, please send us an e-mail, and we'll let you know how to do that.  I'll write more about it later.

I hope you're having a great day!

We've had a very busy week with meetings in D.C. and appointments with the orthotist.  Taylor had her brace adjusted and new straps put on.  We love it, and she really walks so much better when she wears it.  They had to put a lift under her heal, because her right leg is shorter than her left.  She also tends to overcompensate, so we're working on that with her as well.  Cidny, our orthotist, looked at Erin's TLSO (body brace) to make sure it still fits well after her surgery on her chest and abdomen.  Everything looked good, so we put it on her for the first time in about 7 weeks.  Needless to say that she wasn't very happy.  She got used to not wearing it, so having it back on and being restricted again was tough on her.  She had a pretty emotional drive home, and she couldn't reach the button to put her window down at first.  I readjusted her seat so she could reach, which helped a bit, but that first day was difficult.  Today, however, was much better, and she didn't complain at all when I put it on her.  I warned her teacher that she may complain at school, but she didn't.  Go Erin!!  She has really learned to adjust to things quickly.

We are going to be participating in a Radiothon tomorrow (Thursday) for Children's National Medical Center in Washington D.C.  I'm not sure when we will be on, but you can hear a live broadcast from their website at http://www.mix1073fm.com/  We've done 2 other Radiothons for them, and it's always so much fun.  We are of the mind that whatever we can do to give back to that hospital, we will do it.  Our little girls are here with us because of the wonderful doctors, nurses, and other amazing staff members at CNMC.  We could never thank them enough, so instead we do everything we can to help them. 

We hope you have a great day!!

We've had a great weekend!  Yesterday was the day for our neighborhood yard sales, so I gathered up the last of our baby gear and hauled it outside for the sale.  Apparently there weren't too many people out shopping for baby items, because we only had a few people stop at our house.  We did sell a few things, but we still have the majority here.  The best thing about the sale was that the girls came outside and played while it was going on.  They loved that!  Erin was cruising around in her power chair, having a blast.  Quite surprisingly, they didn't get upset about the things I was selling, and they only asked to play with a few of the items.  :0)  Erin really wanted to get in the double stroller I was selling, telling me it was too hot and she needed some shade.  After the sale was over and we had hauled everything back inside, someone came to our door.  She wanted the double stroller, and she tried to talk me into selling it to her for $10.  After going back and forth about it about 5 times, she then said she would pay $12.  I said no to that as well, and she asked me about 4-5 more times before finally giving up.  No means no, o.k.?!  I felt like I was back in AZ again!  Anyway, after that interesting exchange, I listed our remaining items on Craigslist and have sold two of them already.  I think I may sell another one tomorrow (the double stroller) for the price I asked.  We made a little bit of money, which is definitely needed right now.  Phew!

Today, the girls and I made the journey to Leesburg, VA to attend an event put on by paws4people.  It was actually the first fundraiser for a new organization they are starting called paws4veterans.  The goal is to give wounded warriors returning from the war service dogs to help in their recovery as well as to enable them to work through their Post Traumatic Stress Disorder.  These dogs can do wonders, and I hope this program takes off quickly.  We were there because we are the first military family to be receiving a dog, and it's an exciting thing for everyone.  The girls were just excited because they were able to see their new love, SOLOMON.  They absolutely adore him, and he seems to like them all as well.  They spent most of the time during the presentations down on the floor playing with him.  In fact, at one point, I was the only person sitting up at the table, because Heidi and Kyria were down on the floor with the girls and SOLOMON as well.  Remember, most of the time Erin is very shy and quiet, especially in a room full of strangers; however, when she was around SOLOMON today, she was a different girl.  I had to actually tell her to be quiet, because she was being the loudest!  Amazing what a change these dogs can bring.  Heidi took him up to the front of the room for a demonstration, and she had him sit while she placed some items on the ground.  She put down his leash and a pen.  After she sat down in a chair, she told SOLOMON to get his leash.  He quickly went over and came back with both items.  He was anticipating that she would ask for the pen and brought it at the same time.  She also put a sock on her foot and told him to tug.  SOLOMON pulled the sock off quite easily.  It was so great to see him doing this at such a young age!  Erin is even more excited now, and she really hopes that she will get SOLOMON.  We hope so too, but we'll just have to wait and see.  It's great to see Jade around him, because the first few times she was around the dogs, she was terrified.  Today, she couldn't get enough of of him.  And Taylor is just a natural with the dogs.  I think she secretly wishes he could be hers.  Maybe someday she can have her own dog.

We took some pictures with our new favorite guy.  Here he is with three girls who love him:

A Second Chance at Life for the Christopher and Dana Reeve Paralysis Act: Call Your Senators Today!
Please call your Senators today and spread the word!

Urgent! Senate Majority Leader Harry Reid (D-NV) remains a champion for the paralysis community and plans to once again bring up the Advancing America's Priorities Act, S.3297, which includes the Christopher and Dana Reeve Paralysis Act (CDRPA), for a vote in the Senate. As of this writing, Senator Reid is trying to get the bill to the floor for a vote BEFORE the end of next week, when the Senate will go on recess until after the Election. All of us can help Senator Reid by taking a minute to call both of your Senator's DC offices and ask them to support the Advancing America's Priorities Act:

1. Speak with the Health Legislative Assistants, and ask them to support bringing S 3297, Advancing America's Priorities Act, to the floor for a vote before the recess at the end of next week. Be sure to mention the Bill Number.

2. Ask them to vote YES to bring the bill up for a vote, and YES for passage.

3. Let them know that the Christopher and Dana Reeve Paralysis Act, paralysis legislation that will support scientific research, rehabilitation and quality of life, is included in this bill; explain why this is important to you.

Phone numbers for your Senators' offices can be found here. Enter your zip code in the box on the left to go to your local contact information.

Senate offices DO keep track of phone calls received from constituents, especially as they relate to a particular bill. When S 3297 came up the last time, only 3 Republicans voted in favor; we know for a fact that 2 of them had multiple visits and phone calls from U2FP supporters. Once again, it will be important to contact Republicans as the Democrats have been unanimously supportive of this bill.

Thank you for all your efforts - without you we wouldn't have gotten this far, and with you we know we can go all the way! Let's Unite 2 Fight Paralysis today by passing the CDRPA!

I know some of you may be thinking, "well, I can't just call up my Senator.  I've never done anything like this before!"  Believe me, I felt like that the first time I did it as well.  I was nervous, and I wasn't sure what to say, but it is really very easy.  Actually, you can just kind of follow the directions listed above and use them as a script.  As far as telling them why the bill is important to you, you can always mention Erin's name or tell them about other people you know who are affected by paralysis.  In all of our encounters with our Congressman and Senators, they have always been very willing to listen.  Just give it a try; you may be surprised!  It would mean the world to our family and many others if you would make the calls. 

Also, while I'm talking about our government, if you haven't done so already, please register to vote.  It is so extremely important, and this, too, is easy to do.  This election is a turning point in our history... be a part of it!

Just a little about our family today.  Ever since Erin's surgery, her left eye randomly starts to hurt, and if she touches it, it swells up quickly.  I'm not saying that it's necessarily related in any way, I just wanted to give you a time frame.  It happened once when I had Erin in for a follow-up with her surgeon, and he couldn't quite figure it out either, but it did concern him.  He thought maybe she had been allergic to the tape they put over her eyes during the surgery, but I can't imagine that would still be affecting her today.  Anyway, it hasn't actually happened for a few weeks, but for some reason it did today.  It was a little swollen this morning when she woke up, but it only started to hurt right before we left for school at noon.  I gave her some Benedryl, hoping that would help;  however, right after I dropped the girls off I received a call from her teacher saying her eye was pretty swollen.  Well, I'm not sure what to do.  Is this in the realm of the eye doctor or a regular doctor?  Hmmmm....  I guess I'll start with her pediatrician and go from there.  I'm sure he loves my off-the-wall phone calls!  :0)

I hope you all have a wonderful weekend!  We're supposed to go to a fundraiser for paws4people on Sunday, but we have no way to get our entire family to the event.  It's quite a ways from our house, so it's not like we could shuttle people back and forth.  I hope we can come up with something.  We'll see....

Lots of love!

We all want to wish K.J. a very Happy 16th Birthday!!!  Wow, can you believe it?!  We hope he has an amazing day, and we can't wait to celebrate with him this weekend. 

I want you to watch this video from YouTube:  http://www.youtube.com/watch?v=JW1Aqri9rKU   The man who made it did a great job.

O.k., really quickly....  There were quite a few of you who wrote to tell me I should try online teaching, which is something I would love to do.  The problem I am having is finding the websites to do this.  If any of you know of specific websites where I can apply, please e-mail me with the information:  bucklestwins@aol.com    Thank you!

Oh, yesterday after school, Erin was lying on the floor playing.  All of a sudden she said, "Mommy, look at me!"  I looked over and she had herself up in a full push-up... literally.  Her legs were pushed out straight behind her, her arms were locked out straight, and her body was not sagging at all.  I couldn't believe my eyes, and I called for Kevin to come and see.  Just to prove it wasn't a fluke, she went down to the ground and pushed herself up again!  Wow!  Way to go Erin!  Of course my camera wasn't anywhere near me, but I will try to get her to do it again today.  This time I will be ready!

I forgot to tell you part of the story from Monday night.  They asked one of us to tell our story to everyone at the event, and I asked Kevin to do it.  He is such a wonderful speaker, and I knew I would cry if I were to tell it.  He did an outstanding job, as I knew he would!  As he was talking about all of Taylor's struggles, he told everyone that she was chosen to be student of the week at her school.  Everyone in the entire auditorium exploded in applause, and I looked over to see Taylor's reaction.  She had the most precious expression on her face, and my heart completely melted.  You could see the pride and excitement she was feeling, and her smile spoke volumes.  There were tears in my eyes as I clapped and cheered along with everyone else for my brave little girl.  We all love you, Taylor!!  And thank you Kevin for doing such a wonderful job, and for mentioning that seemingly small but extremely important piece of information. 

The girls are all having a great week at school.  Each day brings something new and exciting, and they love their teachers.  I have another amusing "Buckles Girls" story.  Erin and Jade had music class for the first time yesterday.  They came home singing a song (over and over again), and Taylor said, "Hey, that's the song that I learned in music!"  She sounded very indignant, as she must have thought that her class learned a song created exclusively for them!  Poor kid!  Meanwhile, Erin and Jade just kept on singing....  :0)

Well, it looks like Erin may not get her service dog until October or November of 2009.  We truly want her to receive the best dog for her, so we don't mind waiting.  It will just be exciting when we figure out which dog it is!  I think it will make it easier for Erin to wait if she knows which dog she will be getting.  They're thinking that SOLOMON may be a great match for her.  He is one of the black lab puppies.  He came to Kevin's show this summer, and every time he was near Erin he just snuggled up to her.  He is adorable!  We'll see.  We'll be getting them together soon to see how they interact.  Right now SOLOMON is at the top of his class, but as paws4people has told us, that could always change.  We know that they are going to make sure Erin has the very best dog possible, and we feel absolutely blessed that we found them.  Thank you Meek family!

We want to thank the many people who have written in our guestbook and sent e-mails.  As I've said before, if you sign our guestbook, even if you put in your e-mail address, we cannot see it.  The only way we can see it is if you put it in the body of your message.  For those of you who have sent e-mails, I want to apologize for not getting back to you yet.  These past few weeks have been really crazy, and I just have not had any time to reply to anyone.  Thank you to those of you who would like to help us to look for assistance for our van.  We cannot tell you how much it means that so many of you would like to help in some way!  Joan, I'm not sure if there is anyone in charge, but I know that Amanda, Carol and Wendy have left contact information for anyone who would like to help.  Thanks for asking.

We want to congratulate our friends Cindy and Chris on the birth of their beautiful baby girl!!!  We can't wait to meet her! 

We hope the rest of your week is wonderful! 

We had the most incredible night last night!  We borrowed Kevin's sister's vehicle (thanks Kim and Brian!), and we all went out to George Mason University.  It was the end of the sorority recruitment, and the evening was a big celebration.  Terry Henry, from paws4people, was also there with one of the therapy dogs, ADDIE.  Before the revealing of the Rho Gammas (Recruiters), they had our family get up on stage.  Kevin told everyone our story and Terry spoke about the paws4people service dog program.  The Panhellenic Council decided that they would take $10 from each $25 recruitment fee, and they would donate the money for Erin's service dog.  We were presented with a check last night for $3,000!!!!  Wow, that is so amazing!!  They said they set a recruitment record this year at George Mason.  We were completely overwhelmed by the amount raised, and we're so happy that we can give this money to paws4people for the training of Erin's service dog.  We want to thank everyone involved, especially Kiley, for everything you've done to help our daughter!  You are all amazing, wonderful women, and we are blessed to have the opportunity to know you!  I cried, of course, as they had me read the amount of the check, into a microphone no less.  When I contacted the sororities, I had no idea if I would even get a response, and now we are working with many outstanding young women who want to help our family.  Thank you from the bottom of our hearts!

No word on our van yet, but we do have many offers for assistance in looking for help, and we can't tell you how much we appreciate that!  I do have another story about our car to be added to the list.  Last Friday I took the Mazda in to our mechanic, because it wasn't running well (and we needed a new tire).  As soon as they looked at it, they came out to tell me that we were literally minutes away from blowing the engine on that vehicle.  After reeling from the shock of that news, I asked if they could save the car.  They said they should be able to.  Oh my goodness, I can't imagine what we would have done without either vehicle!  Thankfully, after some work, they said that it should be o.k. for now, but we just have to keep a close eye on it.  You can't imagine the relief!  I guess we have to laugh, because there is nothing else we can do. 

Taylor got a perfect score on her first spelling test!!!  Yeah!!  Go Taylor!  We're so proud of you!  And she has been chosen as student of the week this week for her class.  That means we got to put a poster together that is all about her.  We picked out some pictures and special items that she can talk about, so everyone can get to know her better.  What a great idea!  Thanks Mrs. F!!! 

Honestly, if it weren't so unbelievable, this would be comical.  This morning on our way to take Taylor to school, we got a flat tire on the Mazda.  Seriously, I didn't know whether to laugh or cry!  It happened on a road that has absolutely no shoulder, and the ditch on both sides goes straight down.  So, there I was, stopped in the middle of the road, trying to figure out how I was going to change the tire there.  I called Kevin, only because I was so frustrated I didn't know what else to do.  Of course, he felt helpless, because he was at work in D.C., with no vehicle to come out to help in any way.  As I was talking to him, two gentlemen pulled up and asked what was wrong.  After explaining that I had a flat tire, they offered to help.  In my state of frustration (and the fear in the back of my mind), I declined and said that I was sure I could change it myself.  Kevin couldn't believe I turned down their offer to help.  However, I had all three girls in the car, and I'm sure I've seen too many horror movies about women accepting help from strangers.  Anyway, I decided that I needed to get off the road, as it was too dangerous to keep the car there.  Thankfully there was a community center about a quarter of a mile up the road, so I very slowly drove up to the lot, meanwhile probably ruining the rim of the tire.  As I pulled in, I saw many cars parked there and a large group of gentleman standing around, most likely waiting for a meeting of some kind.  When I got out of the car, many of them walked over, and there were the two nice guys who had offered to help before.  They smiled and said, "We told you we would help you".  They all immediately set to work changing the tire, no questions asked.  I wouldn't have even been able to change the tire by myself, because the car was too close to the ground on the side of the flat tire.  The men had to actually lift the car up just to get the jack underneath it.  I'm quite sure I couldn't have done that, even though I am a superwoman!  Ha!  I kept thanking them, because I was so relieved and once again completely overwhelmed by the kindness of others.  They certainly didn't have to help us, especially since most of them were dressed quite nicely, but they didn't even hesitate.  I called Taylor's teacher to let her know we would be late, and she reassured me it would be fine.  Taylor had her first spelling quiz this morning, but her teacher said she would make it up with her later if we didn't get there in time.  Now, even though Taylor knows all of the words backwards and forwards, I know she was a little nervous for her first quiz, and I truly wanted to get her there in time to take the test.  Well, thanks to those wonderful gentlemen, Taylor was only about two minutes late for school.  Even though I thanked them profusely while we were there, I wish there was something more I could do.  I didn't even get their names.  Well, even though I'm sure they don't read our website, I would like to thank them here as well.  We are forever grateful for your help this morning.  You definitely saved the day!  The crazy thing about the whole thing is that there is NEVER anyone at that community center. 

So, after I drop Erin and Jade off at school this afternoon, I have to see if the tire can be patched or if we need a new one.  I also need to get the oil changed in the car, since it is our only vehicle and it is not running well.  I'm hoping an oil change will help a little.  Keep your fingers crossed! 

Before I write anything about us, I just want to take a moment to remember all of the men and women who lost their lives in the terrorist attacks seven years ago.  We send our love and prayers to all of the families and friends of those who were lost, and we hope they know that our nation remembers.  Each time I pass the Pentagon, I think of that day.  It's one of those days that we remember exactly where we were and what we were doing when we heard the news.  I was teaching at the high school I actually graduated from, and I was pregnant with Taylor.  I remember thinking, "what does this mean for my daughter?".  It was a frightening day for our entire country and a reminder that there are some very evil people out there.  Please take a moment out of your day to remember all of the innocent people who died, and please say a prayer for all of our service men and women who are putting their lives on the line each and every day for us.

Now I want to send a heartfelt thank you out to everyone who has signed our guestbook with words of encouragement and support and for the many ideas to try to help us.  Just like for many, it is extremely difficult to ask for help, even for something small; however, this is nothing small.  We have been completely overwhelmed by the caring and generosity of so many, and we know that we are surrounded by the very best people in this world.  There are just no words to adequately thank those of you who have generously donated money to our family.  Each dollar counts more than you know.

As far as our van is concerned, we still don't have any answers.  Some of you have fantastic ideas, but many of them are things we would need a lot of help in doing.  I wouldn't even know how to go about contacting people about it, and I guess we would need someone who isn't afraid to actually ask for something.  There is a HUGE difference between us saying we need help and asking for a vehicle.  The only thing I can imagine is the look of disbelief on the person's face and laughter as I walk away.   I know that sounds horrible, but that's how far fetched it seems to me.

Everyone here is doing well.  The girls are excited to go to school each day, and they always have fun stories to tell later.  Erin and Jade come home singing great songs, and they carry lots of fantastic artwork in their backpacks.  Taylor is making some friends, which she loves.  She comes home everyday with the work she has done and tales of how she got a "thumbs up" from her teacher.  We are so proud of her.  She has a few medical issues she deals with at school, and she is doing an outstanding job!  She did have sad story when she came home yesterday.  She said they were playing outside for recess, and a bunch of kids were playing tag.  Taylor said she asked them if she could play, but they ignored her.  She tried to make up the excuse that they didn't hear her because they were talking, but then she turned around and said, "I know I'm not the best runner, mommy".  O.k., so that was like a knife through my heart.  That junky tumor!  Taylor already understands, and that breaks my heart.  We just have to encourage her to do the things she's good at and hope that she makes a few really good friends that will stick with her. 

We hope you all have a wonderful day!  Thank you again for everything!!

Love and Hugs to you!!!

Everyone in our family is doing well, but we did have a very upsetting event happen yesterday.  While the girls were at school, Kevin and I decided to take some items to the landfill.  On our way there, something gave way in the engine of our van, and it immediately started smoking, shaking, and making a very loud noise.  When Kevin got out to look, he said we were leaking oil like a fountain, but we had no choice but to try to make it home.  It was almost time to pick up the girls from school, and we had no other options.  Thankfully we made it home (barely) amidst some honking and people pointing.  Seriously, did they not think we noticed the noise and horrible smoke coming from our vehicle?  "What?  Oh, our van is smoking?  We hadn't noticed!"  :0)  Anyway, I was able to transfer the car seats to Kevin's car (a little Mazda) and head off to pick up the girls.  Now, they think it is the coolest thing to ride in daddy's car, because they can roll the windows down by themselves.  So, even though it was in the high 80's and humid, we had a pleasant, windy car ride home with all of the windows open.  Of course, the oil light in that car came on as well.  When it rains, it pours!  :0)

After calling our mechanic, a tow truck came to pick up our van.  After looking at it, he called last night to give us the bad news.  Something must have been loose in the engine, and when it let go, a rod was thrown.  It became a missile that went through our engine and ended up embedded in our oil pan.  So, the really bad news is that we either need a whole new engine or a new van.  Well, to be perfectly honest, neither option is possible.  We're not sure what we're going to do.  And in the meantime, we can't go anywhere as a family.  The car holds two car seats in the back and Taylor's booster seat in the front.  Oh, I know it's probably completely unsafe to have her up front, but we really don't have a choice.  We don't know what else to do.  We're stretched as thin as we could possibly be financially, without completely drowning, and there is no way we can afford a new engine or a different van.  And, since Kevin works in D.C. (about 45 miles from home), there is now the issue of him not having a vehicle to drive to work.  Thankfully he was able to catch a ride this morning, but I'm not sure how that will work on a daily basis.  Aaaaahhhhh Stress! 

O.k., just to be perfectly clear.  I did not post this information to beg for money or help;  however, I'm sure we'll be hearing from our AOL "friend" from Reston, VA who loves to complain about what we post.  This is our website, and we post news pertaining to our family.  This issue greatly affects all of us.  There are many people who actually care about our children, and they want to know what is going on.  For those of you who think we're begging for money, I'm sorry that you so completely misunderstand our family. 

Erin's pressure wound still has not healed.  Because it is in such a terrible spot, it could take a very long time to heal.  The difficult thing for me is that I just cannot tell if it is even in the process of healing.  I spoke to Ms. Becca yesterday from KKI, and she wants us to keep taking pictures of it and sending them.  That way they can help us keep an eye on it, and they can give us a more objective opinion because they will see it once a week as opposed to every day.  It's frustrating and a little frightening.  I guess as long as it's not getting worse, I shouldn't be too worried.  Thankfully, it doesn't bother Erin at all.  She just keeps on being her happy self, even when she can't do all of the things she likes to do because of that wound.  Go Erin!

She did have a rough day yesterday as well.  When I got to school to pick her up, Erin's teacher said that she became completely lethargic while they were playing outside.  Remember, Erin can't control her body temperature, and she tends to overheat very easily.  It was probably a mix of a number of things:  she was overheated, dehydrated and probably a little bit hypoglycemic.  I noticed that she had not eaten much of her lunch, so that definitely didn't help.  It's tough for her on hot days, because she wants to play outside with the other kids, but her body just can't handle it.  Once I had her in some air conditioning and gave her a snack and some water, she seemed to perk up again.  Whew!  I can handle not having a van, but I have a difficult time handling it when my children are sick or injured.  Thank goodness Erin is o.k.!

Taylor and Jade are doing extremely well.  Taylor adores school, and she is excited about making new friends.  She even had some homework last night, which she thought was pretty cool.  I guess we'll enjoy that while we can!  :0)  She has been having some leg pain, which could mean issues with retethering, or it could just be that she's more active now, and her body is adjusting.  We'll just have to wait and see.  Jade is her spunky little self, always offering up advice or words of wisdom.  She is way too funny!

K.J. had some homework over the weekend that kept him pretty busy.  He didn't seem to mind it too much, but as the teachers pile it on, I'm sure that will change.  He helped us a great deal in cleaning the basement and garage, as we are working to unclutter our lives.  I can't wait until that is done! 

We hope you all have a fantastic week!  Please stay safe!

Well, we survived the tropical storm!  LOL!  We just received a lot of rain and some wind, but it wasn't bad at all.  The girls couldn't believe how much rain we were getting, and they thought the street out in front of our house looked like a pool.  It turned out to be a great day to get a lot done in our house, so we were definitely happy about that.

All three girls are excited to go back to school tomorrow.  In fact, they have been asking all weekend when they can go to school again.  That's a great sign! 

Oh, I have another cute Jade story.  On Friday after school, we all went outside to play.  The girls love to play "Freeze Tag", and I always seem to be "It".  Kevin was outside playing too, and as Jade ran by us, Kevin told her that she was really fast.  She said, "I know!  I'm Jet!".  It was hilarious, and we almost fell to the ground laughing.  She kept calling herself Jet, so now that is her new nickname (among others):  Jadie Jet. 

Oh, for those of you who like to shop online, Amazon, Under Armour, and many other great stores have been added to the iGive shopping site.  If you would like to shop and have a portion of your purchase be donated to a great cause (like Erin or many others), just go to www.igive.com .  It's a fantastic program.

We hope you've had a fantastic weekend!  We want to wish Mateo and McHale Shaw a happy 2 year separation anniversary (yesterday)!  Way to go, boys!  We also want to congratulate Nick Deyo on his amazing accomplishment!  Go Nick!

First of all, I would like to thank everyone for the wonderful birthday messages.  I've never posted anything about my birthday in the past, but I truly appreciate my dear friends who remembered and took the time to call, post or e-mail something.  I would like to thank the Riley family for the beautiful bouquet of flowers -- you are all so sweet! 

This week has been crazy busy!  We went to the swimming pool on Monday for our "last day of summer vacation".  The girls loved it, and they really enjoyed meeting up with their friends Rose and Lilly.  Tuesday was their first day of school, and the excitement in our house was palpable.  Taylor could hardly wait!  Erin and Jade were excited too, but they have been to school before.  This was truly Taylor's FIRST day!!  You know it was an emotional morning for me!  Even though I had to go into the school to talk to the nurse, Taylor wanted to be dropped off with all of the other kids.  We were so proud of her for being such a big girl.  We know what a big deal it is for her to be just like all of the other kids.  So, of course I had tears in my eyes as I dropped her off and she walked into school by herself, and then again when I had to stop by her classroom to deliver some supplies and talk to her teacher.  Taylor was sitting at her desk, looking at all of the great things in her classroom.  She didn't even notice me until I was ready to leave.  She looked up, gave me a huge smile, and we blew each other kisses.  Oh, so sweet!  I am so thankful for Taylor's teacher, nurse, and the entire administration for making this such an easy transition for her.  Thank you all!!

Kevin has leave this week, so he was able to be there for the first day of excitement as well.  We both took Erin and Jade to their classroom on the first day to deliver equipment and discuss Erin's wound.  They were as prepared as possible.  We showed Mrs. Lisa how to put Erin into her wheeled stander and talked about positioning throughout the afternoon.  Erin and Jade immediately went off to play with their friend Hailey, not even worried about saying goodbye.  That makes me feel good to know that they are independent and secure.  They only attend school for 3 hours each day.  That gives me a small window of time to get a lot of things done, but I'm grateful they are all able to go to school. 

K.J. is a Junior this year.  Wow!!!  Seriously, where has the time gone?!  He has some extremely tough classes, but we have no doubt that he will do well.  I would love to say that he was excited for his first day, but if you know any teenagers, you'll know that very few are excited about school.  :0)  He has really been stepping up lately and displaying responsibility.  We just want him to know that we love him and are so very proud of him.  Good luck this year, K.J.

Kevin and I have many projects going on this week, as well as making many trips to the school each day.  We're trying to catch up on things that we have put off for months (or years in some cases).  Life is non-stop, but I wouldn't have it any other way.

I'm sure I have many more things to tell you about this week, but I'm absolutely exhausted.  I hope everyone else had a great week.  To all of you sweet students who write to us:  Shelbby, Lianne, Alexis, and the many more, we hope these first few days were wonderful.  We look forward to hearing from you throughout the year.

Lots of love!  XOXOXOXOXOXO

We had another really exciting night last night.  First, we went to  the girls' school to visit their classrooms and meet their teachers.  Well, we already knew Erin and Jade's teacher, but it was wonderful to see her again.   They are in the same classroom this year, but they will go to school in the afternoons instead of the morning.  They will miss Mrs. Amanda as their teacher, but I know they will also love Mrs. Lisa; she is fabulous!  Taylor couldn't wait to meet her teacher, and she was thrilled to see her classroom.  She was able to see her desk and the special little surprises waiting there for her.  It almost made me cry to see her so excited.  This is a huge step for her!

We left the school and drove directly to George Mason University for a big Step show.  We were late, of course (sorry Kiley), but only by a few minutes.  We had a fantastic time, and the looks on the girls faces were precious.  They all decided that they want to learn how to do that, and Erin said, "I can just do it with my hands"!  The sororities and fraternities involved did such a great job, and all of the performances were steeped in tradition and pride.  We had the opportunity to meet a few more of the wonderful girls from the sororities that will help raise money for Erin's dog.  We love them all!  And Kiley, we adore you!  We look forward to being involved with GMU and attending many more activities.  At the end of the show, Taylor decided she wanted to dance on the stage where all of the step teams performed.  Kevin put her up there and she started dancing, and then of course, Jade wanted to get up there too.  As soon as she was up on the stage, there was literally one more beat, and then the music stopped.  Oh well, maybe next time.  We were all pretty tired, and Erin's back was bothering her, so we came home.  Since Erin still can't wear her TLSO (brace on her torso to help her sit up straight), she has been struggling with more back pain.  We are worried that being without it for so long will cause her spine to curve more.  Keep your fingers crossed that it's not the case. 

Today we had a meeting with Taylor's principal, assistant principal, teacher and nurse.  It was an opportunity to put together a plan to make sure Taylor has a fantastic year and all of her medical needs are being met.  I don't think we could have found better people or a better school!  We feel extremely comfortable leaving her in their care each day, and I know that she will be fine.  That doesn't mean it's going to be easy for me the first few days... I'm sure I will worry, but I guess that's to be expected.  I told them all of the warning signs to look for if she is going downhill neurologically.  I have no doubt that they will keep a close eye on her. 

Kevin's unit performed for the President tonight.  Of course, security was crazy, and no one could even leave until after he left the Barracks.  You may see something about it on one of the news channels, because there were also some wounded warriors there. 

Oh, some other big news.  I took Taylor to the dentist on Wednesday morning to have sealants put on her molars, and he pulled out her second front tooth on the bottom.  Her permanent tooth was coming in behind it, and we just couldn't get that baby tooth to come out.  He numbed her up and pulled it right out.  She was so excited, because then she could show everyone all day (same day as the picnic and meeting at GMU), and the tooth fairy came that night.  Good stuff!  She tried to wiggle that tooth, but it was stubborn.  The entire experience just reconfirmed the fact that I love our dentist, and I'm so glad we found him.  I didn't have very good experiences with my dentist when I was younger, so it makes me feel really lucky to have found someone so great.  Thank you Dr. Misto and everyone else in his office!

We hope everyone has a fantastic Labor Day weekend!  Please stay safe and have fun!

We have had an extremely busy week so far.  On Monday we made a trip up to Baltimore to the Kennedy Krieger Institute.  Erin was scheduled to go up for two weeks, but she is still not cleared to do any kind of active therapy for another 3 1/2 weeks.  We went up to get some help with her pressure wound and to see if there is anything we can do with Erin while she heals.  Miss Becca and Miss Robin took the afternoon to work with us to make sure we were doing everything we could to help that sore to heal.  We just love going up there, and the girls feel so comfortable in the gym.  They adore all of the therapists and techs!  We want to thank everyone for such a great afternoon!  We also had the opportunity to meet another formerly conjoined twin and her mom (her sister was at home with her dad).  Kira had the same stroke to her spinal cord during their separation surgery that Erin had.  There is no way that is a coincidence!  There has to be something to it!  Just think of the odds:  conjoined twins, which is extremely rare, and a stroke to the spinal cord during separation surgery, which is also extremely rare!  Astronomical odds!  Anyway, it was wonderful to finally meet them.  We have e-mailed and spoken on the phone, but this was our first opportunity to meet.  We also met another family with a little boy with paralysis.  His mom is feeling a little bit overwhelmed with the prospect of all of the equipment and where to get it.  We're hoping we can help them, even in a small way.  It is often just nice to have other people to talk to that understand what you are going through. 

On Tuesday we had a small break, so we could give Erin's bottom a chance to heal.  Becca and Robin said it was o.k. for Erin to sit for short periods of time, but the key for her is to change positions often.  We're so glad, because that means that Erin will be able to start school on time.  It would have been pretty tough on her if she couldn't go to school with her sisters. 

Today was an absolutely wonderful day.  Our family went to a picnic for Kevin's unit.  It was held at Bolling Air Force Base, which is right on the Potomac River.  They had two big moon bounces, a big basketball court, and a playground.  Well, what more can you ask for?!  We had so much fun!  Taylor has a good friend, Lauren, that she loves to play with when they can get together.  Lauren is very helpful, and she wanted to assist Erin when needed.  Of course, Erin doesn't usually want any help, but Lauren was there if she did.  :0)

After the picnic we were off to meet some phenomenal people.  In our quest to find help in raising awareness and funds for Erin's service dog, I sent out an e-mail to the Panhellenic Council at George Mason University.  The council is the governing body for the women's sororities/fraternities on campus.  I wasn't sure I would receive a reply, but I wanted to give it a try.  Much to my surprise, I received an e-mail just a few days later saying the council was meeting, and they would decide whether or not they would be able to help us.  Well, to make a long story short, these amazing women have decided they would like to help us in raising money for Erin's service dog and to raise awareness on the importance of these dogs for people with disabilities.  We went to campus this afternoon to meet them and to tell our story to the rest of the council.  What a fantastic experience!!  We are so excited to be working with them, and they already have some great ideas!  What a blessing to our family!!!  Some of you may be wondering why we need help with all of this.  The cost to raise and train a service dog is almost $32,000.  There is no possible way that we could pay that on our own.  However, because it will be such a life-altering gift for Erin, we are willing to do whatever it takes to make it happen.  These wonderful women seem to feel the same way.  Wow, there are just no words to express our gratitude to them and to everyone who will participate in these events!!  There are such great people in the world, and we are so lucky to have met some of them today.  Thank you all!  Oh, and I ran into one of my former students from when I was teaching at Forest Park High School in Woodbridge.  That was so much fun!  It was great to see you, Scott!!!

With the girls starting school next week, I will start my quest to find a job that will work with our schedules.  The difficult part is finding one that will allow me the time I need to take the girls to therapy and doctors appointments.  Most of you don't know how crazy Kevin's travel schedule is, because I never talk about it, but that makes it even harder to find something that will work.  I do miss teaching, and once they are all in school full time, I can probably do some subbing, but for now I will need to find something that has shorter hours or something I can do via the internet.  I just need something so we can have a second income.  I can't go back full-time, because I would then need to pay for daycare for Erin and Jade, and that would cost as much or more than I could make.  It wouldn't make sense.  Anyway, I'll let you know what I find.  Wish me luck!  :0)

Please keep my mom in your thoughts and prayers.  She just had surgery yesterday, and she is still in quite a bit of pain.  We love you, mom, and we hope you heal quickly!

We hope everyone has a great day!  Thank you to everyone for leaving messages on our guestbook and for the great e-mails.  We really appreciate them all.  We also want to thank those of you who gave us suggestions to help heal Erin's pressure sore.  They were all very helpful!

Remember, for those of you who are 18 and over, please register to vote.  This is a historic election, and you need to be a part of it!

We're back from our appointment with the wound care nurse.  She said it is a stage 2 pressure sore, and she gave us some cream to put on it.  Hopefully that will help; however, the biggest part of her healing will be keeping her off of her bottom.  That will be a challenge!  :0)  Although, if I sit her up for something, she immediately tells me she can't be on her bottom, but she still asks to go outside to use her ramp.  I guess in her mind it is o.k. to do the things she wants to do, but not the things I need to do with her.  Silly girl!

Here are a few pictures of the girls as they enjoyed the new ramp.  I'm also posting a picture of Erin and Jade on a walk.  Too cute!




Our family would like to wish my parents a very happy anniversary!!!!  They have been married for 49 years today.  Wow, Mom and Dad, what an inspiration!!  We love you and hope you have a wonderful day!!

We want everyone to know that today is Conjoined Twins Day.  Let me explain to you what this day means to us.  All of the families we are in contact with that had conjoined twins decided there should be one special day during the year when we stop and remember all of the sets of conjoined twins who have earned their wings and are no longer with their mommies and daddies.  We also want to have a day to celebrate the twins who have miraculously survived.  All of these precious children, whether they are up in Heaven or are here on earth, have something very special to teach the world.  While this day is not nationally or internationally recognized, it is important and special to all of our families.  Now, it was somewhat of a challenge to come up with a date, because most of our children do not share birthdays or have any other special dates in common, so we had to come up with something that could be meaningful to everyone. After putting in a great deal of thought, we came up with August 21st.  We chose the month of August because it is the 8th month.  When you turn an 8 on it's side, it is the symbol for infinity.  All of our families are infinitely connected (or conjoined), because of our children.  We are one big family who shares a very special bond.  We chose the 21st because our children were two babies joined as one.  While we know each family has special dates they remember/celebrate each year, August 21st is one we celebrate all together.  Some families release balloons, other families may start a different tradition.  Erin and Jade and Taylor like to send balloons up to all the special twins in Heaven.  So, to all of the families that have been blessed with carrying conjoined twins, Happy Conjoined Twins Day.  We carry you in our hearts each day!

Now, for some extremely exciting news!  A gentleman named Bob Smith from KM Builders, Inc came to our house this morning and built a ramp for Erin in our garage.  She is now able to independently travel in and out of our house!!  I can't even begin to explain the look of sheer joy on her face the first time she went down the ramp.  Of course, the only thing that could beat it was the look on her face when she went up the ramp and went in the door!  Oh my goodness!  So many emotions!  With the utmost gratitude in the world, we want to thank Keith Martin, Bob Smith, and the many other people that worked hard to make this possible.  This day feels so much better than every Christmas put together.  Today, Erin was given independence, and that is priceless!  I have pictures that I will try to post this evening. 

Of course, the difficult part of today was the fact that Erin is not supposed to spend ANY time on her bottom.  If I thought I was going to keep her out of her power chair to try out the ramp, I was sorely mistaken!  There was nothing that could hold her back.  So, I gave in and let the girls go up and down the ramp for about 30 minutes, having the time of their lives.  I gave in again this afternoon for another 30 minutes, because I've never seen Erin so excited to be outside, EVER!  Now that she has the ability to go in and out by herself, she loves to be outside.  They chased each other around the lawn, playing tag and other games.  Then, Erin asked if we could take a walk.  I think I have a permanent smile on my face!  Thank you again to everyone involved in this life changing event!

We are taking Erin to see a wound care nurse tomorrow.  Hopefully she can give us some great ideas to help Erin's pressure sore to heal.  Keep your fingers crossed!

Thanks for stopping in!

We have had another setback with Erin.  Because of her inability to spend any time on her tummy, she had to be on her back and bottom all the time.  Erin has developed a pressure sore on her bottom, right at the end of her tailbone.  We went back to see the surgeon yesterday, and he was very happy with how her incision is healing.  He gave her the green light to lie on her tummy and commando crawl, and after showing him her pressure sore, that is now all she can do.  Erin has no fat or muscle tissue to protect her bottom.  Because she was sitting and scooting around a lot on it, the pressure of her tailbone pushing down created a wound.  Many people with spinal cord injuries or anyone in wheelchairs often get pressure sores.  Unfortunately, it is sometimes difficult to get them to heal, especially in that area.  Erin cannot lie on her back, and she is not allowed to sit up.  She can't even stand in her wheeled stander, because the pad to hold her up goes right across her bottom.  She is supposed to start school in 1 1/2 weeks, but if it is not healed, she will not be able to attend.  She is not supposed to put any pressure on that area until it is completely healed.  Poor little girl!  We'll be working with a lot of people to try to get this healed as quickly as possible.  Here is a link to a pretty good website that explains pressure sores (for anyone who is interested):  http://sci.washington.edu/info/pamphlets/pressure_sores.asp  As far as I can tell, Erin has a stage 2 pressure sore.

I have been completely remiss in thanking everyone that has helped us out in the past few weeks or sent Erin something special.  I know I thanked the doctors and nurses at Children's, but I never thanked everyone else who made our stay so much easier.  We want to thank Emily, Nadia, Katie, Stephanie and Alicia!  You ladies are amazing!!!!  And yesterday we had the quickest, easiest appointment with Dr. Guzzetta  that we've ever had.  Thank you!  Also, it was wonderful to see everyone in the Volunteer Services office again, especially Grandma Terry, because we haven't seen her for a very long time!!  They are like our second family!  We love you all!  Anyway, we also want to thank Miss Kyria, Miss Heidi and everyone else from Paws4People for sending Erin the cookie bouquet (all puppy cookies, of course).  We thought that was so wonderful, and Erin loved the dogs.  She named them all immediately, using the names of the dogs already being trained or graduated through Paws4People.  Too cute!  Thank you to Amanda and friends from West Virginia for having a yard sale to raise money for Erin's service dog.  Amazing women, each one of you!  We also want to say thank you to everyone who has been keeping Erin in your thoughts and prayers, and to those of you who have taken the time to write.  Each message is so special to us and will be cherished.  If anyone has sent cards or anything else to our P.O. box, I haven't had a chance to check it since we've been home from the hospital, but I will try to get over there tomorrow.  And last, but definitely not least, thank you to EVERYONE who stops in to check on our family.  It's very humbling to have so many people care!

We'll keep you updated about Erin (and everyone else) as we learn more.  I do want to tell you one quick thing about her appointment with the surgeon yesterday.  As soon as he said that Erin was cleared to crawl on her stomach, Jade got really excited and said, "Hooray!  Now I have my sister back!"  I guess that tells you a lot about how tough it has been on everyone that Erin wasn't mobile.  I can always count on Jade to accurately express what everyone is feeling!  :0)

As most of you have noticed, our little picture in the upper right hand corner has been changed.  I'm not sure why, but I'm hoping this is just a temporary glitch with Freewebs' server.  I've tried to change it, but nothing seems to be working.  Of course, that could just be my lack of knowledge, but I did see that a few other people were complaining about the same issue. 

Erin is still recovering.  She's had some ups and downs, and she still gets tired pretty easily, but she is doing well.  Until she sees the doctor again, we are not allowing her to crawl on her tummy.  Since she pulls herself along on her stomach, we would hate for her to damage anything.  Hopefully she will get the green light soon. 

We went and got the girls registered for school today.  Jade and Erin were so excited and thought they would actually get to go to their classroom, even after I explained that was not what we were doing.  And you can just see the sparkle in Taylor's eye as she contemplates going to school for the first time... she is thrilled!  I hope they have some sort of accelerated reading program for her, because she now reads chapter books by herself.  She is in the midst of reading a pet fairy book and "The Bridge to Terabithia".  I have every confidence in their school to make sure she is challenged.  We look forward to watching her excel.

We do have some concerns about health issues, and it will be difficult for me not to be able to keep a close eye on Taylor each day.  We will discuss all of this with her teacher and the nurse, and hopefully they will notice if there are some changes that become apparent at school.  Because Taylor's spinal cord is already retethered, the possibility exists that she could go downhill rather quickly.  We know her so well, and we notice changes immediately, but because she is going to be new at the school, they don't have that advantage.  I'm sure we'll have great communication with everyone involved, and that will help tremendously.

We have a great deal going on these next two weeks before school starts.  I will do my best to update as often as possible.

Thank you to everyone who has taken the time to post messages in our guestbook or send us e-mails.  It means so much to us that you would take time out of your day to send us words of encouragement and support!  Have a wonderful week!

Erin is doing well in her recovery.  We still battled a fever yesterday, but she woke up without one this morning.  We're hoping it is gone for good.  Keep your fingers crossed!  She is still frustrated with her lack of mobility, but she is starting to scoot around more on her bottom.  We'll just have to keep an eye on that to make sure everything is o.k.

We want to thank Amanda and her family for sending the wonderful gift basket for Erin and the great little gift bags for Taylor and Jade!  It means so much to us, and we can't thank you enough!

We want to tell Taylor how very proud we are of her.  She has learned to do a major task all by herself, and now we feel very confident in sending her off to school.  Great Job Taylor!!!

I posted some pictures of Erin's stay in the hospital.  There are pictures from before surgery (you will see the silly little grin I was talking about as she was falling asleep), immediately after surgery, and the days following.  You will see how swollen she was on Saturday, and with each day it slowly went down.  Erin is such a little warrior, and we are so proud of her for the way in which she fights these battles.  You're our hero, Erin!

Well, Erin was discharged on Monday evening, and we were all very happy and relieved to be home.  We want to once again thank our phenomenal doctors, nurses, techs and PSA's for the amazing work that you do each and every day.  Thank you for taking care of our little girl, as well as the rest of our family!  In the last update, I stated that Erin's fever was gone, but it did return on Sunday afternoon.  It has been up and down since that time, and we're just hoping that there is not some kind of infection lurking in her body.  She finished her last antibiotic on Monday morning, so we'll just have to see what happens.  We are doing our very best here at home to make sure she is well taken care of and as healthy as can be.  Erin's incisions look very good, and her new belly button looks better each day.  She is so excited about it, and she always wants to see or feel it.  Jade is a little sad, but she will have to have a similar surgery down the road, and we will make sure she too gets a beautiful new belly button!  Erin is struggling with the fact that she cannot crawl on the floor, which is her main means of getting around the house.  She cannot wear her TLSO (brace on her torso), which also means that she cannot get into her wheeled stander or her RGO (I'm not sure she's sad about that!).  She is very limited in what she can do at the moment, so we have our hands full trying to keep her occupied.  She is back to her happy little self, and we are just enjoying each moment with her.  Her sisters really missed her while she was in the hospital, and they have been ecstatic since she's been discharged.

I do have some cute stories to share.  While in the hospital, Erin had a drain in her abdomen to get rid of excess blood and fluids from the surgical sites.  The drain prevents the fluid from building up.  When they removed the drain on Monday, we thought they would put a stitch in the skin, since the hole was quite large, but the doctors just placed a bandage over it.  Upon arriving home that evening, I gave Erin a little sponge bath to clean her up from her hospital stay, and I took that bandage off to check the wound and replace it with a new one.  Erin was very distressed to see the hole in her tummy, and she kept talking about it throughout her entire bath.  When I was getting ready to put a new band-aid on the wound, she panicked, worrying that the band-aid would fall in the hole and we wouldn't be able to get it out.  Poor little thing!  After much reassurance, she finally saw that her bandage was firmly in place and wasn't going to fall in.

This morning, Kevin went running while the girls were eating breakfast.  When he got back, he was trying to figure out the distance he ran and decided to drive the route to get an accurate measurement.  After he left, Jade asked where he had gone.  I explained what he was doing, and after thinking about it for a minute, Jade said, "After breakfast I am going out driving".  Erin looked completely exasperated and said quite skeptically, "Jade, how are you going to do that?  You don't have a car"!  I thought that was pretty hilarious.  Jade carefully explained that she was going driving in her boat!  Well, there you go Erin, that explains everything!  LOL

We are going to be relaxing at home for at least the next week, allowing Erin's chest and abdomen to heal.  The doctors have said that the cartilage in her chest will take about six weeks to completely heal, so I'm not sure how long she will have to go without the brace on her torso.  We'll just have to see.  Hopefully she will be able to start crawling sooner than that.

We want to let everyone know that the wonderful family we told you about earlier this summer that was expecting conjoined twins had their twin boys.  With the heaviest of hearts we tell you that Joshua and Caleb lived only an hour and a half before passing away.  Their parents were able to hold them for about 20 minutes, taking in every single second they had with their amazing boys.  I'm sorry I haven't written about it before now, and we want Crystal and Matt and Billie to know that our thoughts and prayers will continue to be with them each day.  We wish there was something we could do to alter the outcome for the majority of conjoined twins.  Please go to Matt and Crystal's website to show your support:  www.miracletwinboys.com 

Our family would like to wish my sister a very Happy Birthday today.  We love you, sis!

Also, to Vanessa who left a message on our guestbook, please send us an e-mail so we have a way to contact you.  We cannot see anyone's e-mail address in the guestbook and therefore have no way of contacting you back.  We would love to talk to you.

Much love to everyone!  Thanks for stopping by!

We just wanted to let everyone know that Erin underwent surgery on her chest and abdomen on Friday, August 8.  We had to be at the hospital by 6 a.m., which meant we had to get the girls up at 4:30.  They did amazingly well with getting up that early, but I think that's because everyone was pretty nervous.  Once at the hospital, we got checked in and got Erin ready.  She normally likes to cruise around in her wheelchair, but on Friday morning she just wanted to cuddle with mommy and daddy.  Taylor was more nervous and upset about Erin's surgery than her own last year.  While we were sitting in the room waiting to take Erin back to the induction room, Taylor came over and wrapped herself around Erin, giving her hugs and kisses.  She stayed like that for quite a while.  She is so sweet!  They ended up giving Erin some Versed to make her sleepy, and she was so funny.  When it started to kick in, she would lay her head back against me like she was falling asleep, and then she would lift her head up and give us this silly little smile.  She was so cute!  Then she got the hiccups, so she was smiling and hiccuping as we walked her down to the induction room.  As always, that was the most difficult part of the entire day.  I tried not to cry as she was falling asleep with the mask on her face, and it was only after she was sleeping that the tears came.  Kevin, ever my rock, was there to comfort me and keep us steady. 

The first incision was made at about 8:35, and the surgery wasn't complete until about 1 p.m.  There were two surgeons involved in the case.  A general surgeon went in and removed the Gortex patch in Erin's abdomen and brought her abdominal wall together.  The plastic surgeon worked on her chest, removing a large fluid-filled cyst and recontouring her chest wall.  Upon our request, he also gave Erin a new belly button.  I think she'll be very excited about that when she can see it.  The surgery went very well, and we are thankful to our surgeons for doing such a fantastic job.

When Erin came back to the recovery room, it was so amazing and such a relief to see her open her eyes for the first time.  Oh, our baby girl!  One of our fears for her during this surgery stemmed from her separation surgery.  The doctors were never able to figure out why or how or when she had the stroke to her spinal cord during that big surgery.  That made it much more difficult to send her back into surgery again.  In the back of our minds, we always had that fear that it could happen again.  Thankfully, she came back to us just fine.  She has been in quite a bit of pain, and she developed a fever during the night that lasted almost 24 hours.  We were very concerned, but we are relieved to tell you that the fever is now gone.  Erin is doing much better today.  She has been eating, blowing bubbles, and sitting up more.  She has been talking, which is so nice to hear, because yesterday she didn't say much.  She is ready to go for a walk in a big wheelchair (so we can prop her up with pillows).  She is not quite ready for her own chair yet, because she doesn't have much trunk stability right now.  She can't wear her TLSO (brace on her torso), because it would put too much pressure on her incision and newly healing chest wall.  She has a drain in her abdomen so the fluid doesn't build up there, and she should be getting that out tomorrow.  They will also be taking the bandages off tomorrow if everything goes well.  The surgeons made the incision along the same line as her first one, so it should look about the same.  Actually, it will look better, because the plastic surgeon removed some of the skin that was really scarred. 

We are so thankful for many things.  First, we are just thankful this surgery is over.  Hopefully Erin won't have to have another surgery for a long time (unless they come up with a cure for her spinal cord injury soon).  We are also thankful to all of the doctors and nurses involved in her care.  You have taken care of her like she is your own child, and for that we are grateful.  Thank you to everyone else (who knew about the surgery) who kept Erin in your thoughts and prayers and to those of you who stopped by to give your support. 

Well, Erin and I are playing Polly Pockets now, so I need to go.  I will try to update again later.  Kevin and the girls will be here soon, and we are all going on a walk together.  Thanks for checking on us.

We just wanted to let everyone know that Erin underwent surgery on her chest and abdomen on Friday, August 8.  We had to be at the hospital by 6 a.m., which meant we had to get the girls up at 4:30.  They did amazingly well with getting up that early, but I think that's because everyone was pretty nervous.  Once at the hospital, we got checked in and got Erin ready.  She normally likes to cruise around in her wheelchair, but on Friday morning she just wanted to cuddle with mommy and daddy.  Taylor was more nervous and upset about Erin's surgery than her own last year.  While we were sitting in the room waiting to take Erin back to the induction room, Taylor came over and wrapped herself around Erin, giving her hugs and kisses.  She stayed like that for quite a while.  She is so sweet!  They ended up giving Erin some Versed to make her sleepy, and she was so funny.  When it started to kick in, she would lay her head back against me like she was falling asleep, and then she would lift her head up and give us this silly little smile.  She was so cute!  Then she got the hiccups, so she was smiling and hiccuping as we walked her down to the induction room.  As always, that was the most difficult part of the entire day.  I tried not to cry as she was falling asleep with the mask on her face, and it was only after she was sleeping that the tears came.  Kevin, ever my rock, was there to comfort me and keep us steady. 

The first incision was made at about 8:35, and the surgery wasn't complete until about 1 p.m.  There were two surgeons involved in the case.  A general surgeon went in and removed the Gortex patch in Erin's abdomen and brought her abdominal wall together.  The plastic surgeon worked on her chest, removing a large fluid-filled cyst and recontouring her chest wall.  Upon our request, he also gave Erin a new bellybutton.  I think she'll be very excited about that when she can see it.  The surgery went very well, and we are thankful to our surgeons for doing such a fantastic job.

When Erin came back to the recovery room, it was so amazing and such a relief to see her open her eyes for the first time.  Oh, our baby girl!  One of our fears for her during this surgery stemmed from her separation surgery.  The doctors were never able to figure out why or how or when she had the stroke to her spinal cord during that big surgery.  That made it much more difficult to send her back into surgery again.  In the back of our minds, we always had that fear that it could happen again.  Thankfully, she came back to us just fine.  She has been in quite a bit of pain, and she developed a fever during the night that lasted almost 24 hours.  We were very concerned, but we are relieved to tell you that the fever is now gone.  Erin is doing much better today.  She has been eating, blowing bubbles, and sitting up more.  She has been talking, which is so nice to hear, because yesterday she didn't say much.  She is ready to go for a walk in a big wheelchair (so we can prop her up with pillows).  She is not quite ready for her own chair yet, because she doesn't have much trunk stability right now.  She can't wear her TLSO (brace on her torso), because it would put too much pressure on her incision and newly healing chest wall.  She has a drain in her abdomen so the fluid doesn't build up there, and she should be getting that out tomorrow.  They will also be taking the bandages off tomorrow if everything goes well.  The surgeons made the incision along the same line as her first one, so it should look about the same.  Actually, it will look better, because the plastic surgeon removed some of the skin that was really scarred. 

We are so thankful for many things.  First, we are just thankful this surgery is over.  Hopefully Erin won't have to have another surgery for a long time (unless they come up with a cure for her spinal cord injury soon).  We are also thankful to all of the doctors and nurses involved in her care.  You have taken care of her like she is your own child, and for that we are grateful.  Thank you to everyone else (who knew about the surgery) who kept Erin in your thoughts and prayers and to those of you who stopped by to give your support. 

Well, Erin and I are playing Polly Pockets now, so I need to go.  I will try to update again later.  Kevin and the girls will be here soon, and we are all going on a walk together.  Thanks for checking on us.

I have once again gone far too long without updating, but at least I have a good reason this time.  We have just returned from a trip to Minnesota to visit my family.  I want to whole-heartedly thank my parents for making this trip possible again this year, because we wouldn't be able to do it without you.  It means so much to everyone, and it is such a wonderful opportunity for our girls to bond with our family.  It was a very special time, and we cherish the moments we are able to spend with grandparents, aunts, uncles, cousins and friends.  One of the most important things we were able to do while there was to attend a few appointments with my dad, who is dealing with some medical issues of his own.  I'm so very thankful that we were able to be a part of those appointments.

We had many special events occur while we were there, and I will do my best to tell you about each of them.  The first great thing was that my sister was home almost the entire time we were there.  It was so much fun to spend time with her, and she was so helpful with the girls.  We attended a party at Tanya and Todd Deyo's house, which was very exciting for everyone.   For those of you who don't  know, their son Nicholas has the same spinal cord injury that Erin has.  We have gotten to know them over the years, and we just adore their entire family.  Tanya is just the greatest mom ever, and she does so much for her children.  We spent the day swimming, eating, playing, watching fireworks, and truly enjoying the company.  We want to thank them for a fantastic day!  You can check out their website at:  www.caringbridge.org/visit/nicholasdeyo  Tanya is convinced that Erin and Nick will get married someday!!  Wouldn't that be something!

Another exciting adventure for the girls was when my brother, Mike, brought his pop-up camper over for us to sleep in.  The great thing was that we put it right next to the house, just in case we needed to go inside for something.  The girls loved it, and they wanted to sleep in it every night!  While I wasn't as enthusiastic about sleeping in the camper, I believe that every child should have the opportunity to go camping (even if it is in the front yard).  We did have a thunderstorm on our last night sleeping in the camper, and I had to carry them all into the house at 2:30 a.m.  That was an adventure!  It was a lot of fun, though, and we really appreciate the effort it took for my brother to haul it over, set it up, and take it down when we were done.  Thank you Mike and Grace! 

We had many great visits with people, and we want to thank them all for taking the time to see us while we were there.  It was so much fun, and we made memories that will last a lifetime! 

One of the biggest events that occurred was during the last weekend of our trip.  We traveled up to Fargo, North Dakota to get together with two extremely special families.  After much planning and a lot of effort on everyone's parts, we were able to spend the weekend with the Fitterer and Carlsen families.  Both of these families also gave birth to conjoined twin girls, and both sets were successfully separated.  What an amazing sight to see three sets of formerly conjoined twins all together!!!  Erin and Jade were able to play with Abby and Maddy Fitterer and Abby and Belle Carlsen.  What an amazing three days!  We absolutely love these families, as they are now part of our family.  Nick Fitterer and Jade "got married" last year when we got together with them, and their relationship continued this year with lots of time spent together and Nick being the absolute gentleman.  It was way too cute!!!  Although, I think he was really happy to spend time with all three of our girls... pretty good odds for him!  :0)  We want to thank both of these families for making this happen.  We especially want to thank the Carlsens for having us all over to your house for the day on Sunday.  We had so much fun!  I will be sure to post pictures as soon as I can.

For me, of course, the most important part of our trip was the time we spent with my parents.  We don't get to see them that often, but each time we do, I realize that our time with them is finite.  I want our girls to enjoy each moment with their grandparents and have many memories to cherish throughout their lives.  We also spent some wonderful days with my brothers and their families.  I feel so lucky to have them all in our lives. 

O.k., so as I am getting tears in my eyes thinking about our visit, I should probably end this for tonight.  I'm sure I missed many important parts of our trip that I will share with you on a different day.  I do want to say Happy Birthday to our nephew Devon.  We love you, Dev!  We want to wish our nephew, Derek, good luck as he gets ready to head off to a new college this year, with many adventures in store for him.  And we want to congratulate our nephew, Jesse, and his fiance, Stacy, on their engagement.  Very exciting news!!!!  We can't wait for the wedding!

Oh, let me just leave you with something that Jade likes to say.  While we were at my parents' house, we spent a lot of time walking outside with no shoes on (sorry Kevin).  Instead of calling them bare feet, Jade calls them naked feet.  So, the next time you don't have shoes on, enjoy your time with naked feet!  Also, as they live in the country, my parents have a lot of daddy long leg spiders around their house.  Jade calls them long legged daddies.  Smile

We have had the opportunity to attend three very special events in the past week:  Kevin's performances.  We all love to go to his shows, and we were very lucky to be able to see three in one week.  Last Saturday Kevin's unit opened for a drum corps show in a city not very far from our home, so we packed up the car for a fun evening.  We set up camp in the bleachers and cheered him on as they came on the field.  All three girls directed right along with their daddy during the entire performance, and you could see the pride in their faces as they watched him.  K.J. even joined us, which was a special treat for us all! 

On Tuesday night, which was our anniversary, the girls and I went directly from our appointment at the orthotist to Kevin's show in front of the Iwo Jima Memorial.  The Sunset Parade is such a beautiful performance!  The girls love it because we sit on a blanket on the hill overlooking the field.  They can be comfortable and move around a little while watching.  We were able to spend some time with him before and after the show, which is always special.  It's fun to watch all of the people come up and request to have their picture taken with him.  As we sit and watch him (in whatever he does) I fall in love with him all over again!  :0)

Last night was extremely special, because not only did we get to go to Kevin's Evening Parade, we met up with some of our favorite people (and dogs).  Our friends from Paws4People came to Kevin's performance, and they brought four of the service dogs.  Terry, Debbie, Kyria and Heidi brought COLT (Grace's dog), ELLIE (Amanda's dog), CAYLIE AND SOLOMON (both puppies training to be service dogs).  Oh, we love them all!!!!  The puppies are absolutely adorable, and I wanted to bring them both home with me.  CAYLIE is a golden retriever puppy and SOLOMON is a black lab puppy.  All of the dogs were extremely well behaved during the entire performance, and they received a lot of attention from everyone there.  The great thing about it was that they drew attention and caused many people to ask questions.  So many are aware of seeing-eye dogs for people who are blind, but they have never heard of service dogs for people with physical disabilities.  This was a great way to bring about awareness and increase public knowledge about the need for special dogs like these.  Another thing that made the evening special:  K.J. joined us again.  Yay!  We love to have him with us -- it makes our family complete.  We want to thank everyone from Paws4People for coming down and bringing these amazing dogs!  We love all of you!  It was great to see you again!

We're hoping to head up to West Virginia sometime this fall so Erin can spend time with each of the dogs.  We would like to establish who her dog will be, so the specific training can begin.  We're excited to find out which dog she will pick.  Now, I'm sure some of you are thinking, "How can a 4 year old pick her dog?", but you would be amazed.  We have been told that there is a certain chemistry and connection when the right match is made.  I do know that Erin had a connection with both puppies last night, and I'm not sure I would be able to choose between either one of them.  They are too cute!

Anyway, we had a great week!  We are extremely proud of Kevin and all that he does, and we are blessed when we are able to share in his gifts and talents.  Please enjoy the new pictures I have posted!  I will have to go back and post some from our Family Advocacy Day, but I wanted to get these up right away.

We want to wish Nicholas Deyo a very happy birthday today!  We love you, buddy!

Have a great weekend!!!!

I forgot to add the link to Congressman Moran's website.  There is a cute picture of the girls (mostly Taylor) as we sat in his office discussing Children's health care.  Here is the link:  http://moran.house.gov/   Pretty cute! 

We also want to take a minute to wish our little friend Nick a big Happy Birthday!!  Nick will be 3 years old tomorrow.  We hope he has a fantastic day!!  Nick has the same spinal cord injury that Erin has, although his happened before he was born.  His mom, Tanya, is having kind of a rough day today as she remembers the events of this day 3 years ago, so I'm sure she would appreciate some positive, encouraging messages on her guestbook.  You can check up on Nick at his website:  http://www.caringbridge.org/visit/nicholasdeyo  

We have an exciting evening planned, so I will try to update tomorrow to let you know what we have going on.

Also, I wanted to tell you that our project with the Baltimore Ronald McDonald House is a go, so look for information on that in the near future.  It will  be exciting! 

Have a great Friday!!

Well, once again I have waited too long to post an update and have a million things to tell you.  I actually had to go back and read my last post to see where I need to start.  I'll try to get it all in in one post.

First, I would like to say that Kevin and I just celebrated our anniversary this week, and I want to wish him a very Happy Anniversary.  He is such an amazing husband, and I am so blessed to have him in my life!  I am thankful each and every day for his love.  He is my best friend and my rock!  Thank you, Kevin, for being the One!  I love you, Sweetheart!

O.k., let's see....  A few days before the 4th, I took the girls to the pool for the first time this summer.  They were sooooo excited!  We took Erin's old wheelchair so she could go on the splash pad and get wet.  She decided that she really didn't like her old chair, but thankfully we will only use that for the pool.  When she is in the pool, she just crawls around in the shallow water, but it was difficult for her that day because there were a lot of kids there.  They tend to run into the water and splash her face without even noticing (they're just kids).  Even when she wears goggles she doesn't really like it, so she spent most of the time wheeling around on the splash pad.  Taylor found a group of girls to play around with and Jade kind of hung out with me.  As we were getting ready to leave, Jade looked at me and said, "Mommy, I really wish Erin could walk so she could play with me".  After fighting back my tears, I told her I wished the same thing. 

I hope everyone had a wonderful 4th of July.  We spent the day at Kevin's sister's house, where they had tons of food and we all had a great time.  Thank you, Kim and Brian!  The girls and K.J. were so excited to spend the day with their cousins, just hanging out and playing games.  Erin enjoyed their house because they have a lot of wood floors, so she could cruise around in her chair.  Their entire basement has wood floors, so we went down there to zoom around and perform singing and dancing shows.  It was so much fun!  We got a big storm early in the evening, so we decided to head home.  Kevin surprised us with a few fireworks to set off at the end of our driveway, which the girls thought was the greatest thing EVER!  They sat in the back of the van (it was still sprinkling a little), watched the fireworks, and they pretended to roast marshmallows over a citronella candle we had burning to keep the mosquitoes away.  Oh, they are so funny!  Jade declared that it was "THE BEST DAY EVER!!!"

On Tuesday of this week, we got the call telling us that Taylor's brace was in.  We headed to the orthotist to have her fitted and have adjustments made.  It fits her very well, and she does a fantastic job walking in it.  It's nice to know that her ankle is no longer in danger of sustaining damage (at least while she is wearing it, which is the majority of the time).  We also had Erin's braces adjusted, because she has developed a bump on the back of her heel.  Initially we just thought it was her heel bone, but it started to get larger.  After doing a little research and talking to her orthotist, we both came to the same conclusion: it is called a "pump bump".  It happened because Erin's heel cords (Achilles Tendons) are tightening up (very bad), and pressure is being placed on her heel by the braces.  He tried to make some adjustments, but he said that we may need to do more.  He also said that Erin needs to wear her braces at least 10 hours each day, but more if possible.  We need to prevent the tendons from getting tight or Erin will have to have surgery to release them.  We stretch her each day, but that is not enough.  Well, she will wear those braces 24 hours a day if it will prevent another surgery.  Ughhh! 

Today we made a trip back to the orthotist so he could check their feet to make sure the braces were fitting them correctly.  Taylor's needed just a few minor adjustments, but Erin's needed much more work.  Yesterday she wore them for 11 hours.  I would take them off periodically so I could check her heels for any pressure areas, but they always looked good for the short period of time I had them off.  However, when I took them off last night to give her a bath, we saw something much different.  Initially, her heels looked great, but after her bath both heels were swollen and hard.  Thankfully we were able to go back today to have more adjustments made.  Hopefully this will do the trick, because she has to wear them.

After our appointment at the orthotist today, we made our way to one of Children's outpatient clinics so Taylor could see a Gastroenterologist.  This is a doctor that specializes in the digestive system.  Some of her issues have a great deal to do with this.  We made this appointment to try to rule out all other possibilities before settling on our first thought, which is that her cord is retethered.  After giving her entire history, from the time she was born (literally!  He asked if she passed her meconium after she was born), it seemed that he too thinks it is because she is retethered.  He did order some bloodwork to be done, to rule out a few disorders, but there may not be any other answer.  He gave us some ideas to try at home to help her, so we'll see how it goes.  Keep your fingers crossed!

Oh, I did want to tell you about last night.  Kevin was reading a story to the girls before they went to bed, and in the story the characters make a wish.  He asked each of the girls what their wish would be.  Erin and Jade each wished for something like a teddy bear, but Taylor's wish was different.  She said that her wish would be for Erin to walk someday.  When Kevin asked her why, she said that she doesn't want Erin to get teased in school for being in a wheelchair, and she never wants her to be sad.  Oh my goodness, Erin has some great sisters!  We're so proud of all of them!

Of course I have even more pictures to add to the site, so they just keep piling up.  I even have a few of K.J. that I snuck in there.  I'll do my best!  It's just so hard to find time to edit them, and I have a difficult time choosing my favorites.  We'll see what I can do! 

I hope everyone is doing well!  Please know that we truly appreciate how much you all care about our family.  Take care!

Today is Kevin's birthday, so I would like to take this moment to wish him a very happy birthday!  As I sit here and try to put into words just how I feel about him, I am at a loss.  He is my everything, and I am so very thankful to have him in my life!  Our lives are so much better because he is in them.  Kevin, you deserve so much more than I can give you, but I do give you my all.  We love you dearly, and we hope you had a wonderful day!!  The girls were so funny this evening after dinner.  They made their daddy some cards and we had baked a cake.  They decided they wanted to surprise him, even though he knew about it all.  We hid in the kitchen and called him down.  When he walked into the kitchen, we all jumped out and yelled, "surprise!"  K.J. came running out of the other room, and the girls thought the whole thing was so funny.  After Kevin blew out the candles on his cake, he went around the table and told everyone what he wished for them.  When he got to Erin, he told her that he hopes she will realize that when she draws herself in pictures, she can draw herself standing up (right now she draws herself in a wheelchair -- always), because someday she will be able to stand up on her own.  As I listened to him, I had tears streaming down my face.  He gets me every time!  Happy Birthday, Sweetheart!

Taylor seems to be feeling better this week, but we are still going to have her checked out.  We took her to the orthotist yesterday to be fitted for a new brace, and they are very concerned about her ankle.  It is so loose, and her fibula slips out of place as she walks.  They are wondering if she possibly has any torn ligaments or tendons.  Taylor would never know because she has very decreased sensation in that leg and foot.  We have asked a number of doctors about her ankle and foot, but no one ever seemed concerned enough about it to order any tests.  Well, the orthotist is concerned enough to put a medical rush on her brace, because right now she is walking without any support.  We will make sure that Taylor has the appropriate tests done (most likely another MRI) to see if there is anything going on in there that we are not aware of.  It is also possible that the ligaments and tendons are just completely overstretched but still intact.  Let's hope for that. 

We were able to get the Swiss Stim unit that Taylor needs for her muscles!  Yay!!!  Thank you, thank you, thank you!  We have been using it since we got it, and we are able to get a contraction in her calf muscle.  So thankful!!!  We are determined to save that muscle. 

We have been busy doing P.T. at home with the girls.  Erin has been on the FES bike at least 4 days per week, and her legs have been moving like crazy.  It doesn't seem like she has any control over them, but it does tell us that the muscles are getting stronger. 

Well, I need to go spend some time with my husband on his birthday.  Have a great evening!

Our weekend was a bit stressful, because Taylor woke up on Saturday crying.  She said that her right foot started to hurt and tingle during the night, and she was awake a lot.  That made us very sad, because we hated to think of her suffering by herself.  Taylor rarely complains of pain, even when we know she must be in a great deal of it, and she never called us during the night on Friday.  Now, the tingling and pain could mean one of two things:  it could either mean that Taylor's nerves in her foot are finally recovering and "waking up" from her surgery in September, or it could mean that her tethered spinal cord is pulling on those nerves, causing pain and tingling and eventual loss of more function.  Of course, we hope with all our might that it is the former, but we unfortunately believe that it is the latter.  There is no way to know for certain, which is the frustrating part.  Only time will tell us, as we wait and watch for more symptoms of her tethered cord.  She has already experienced a few, but they are not severe enough to warrant another surgery yet.  We can only hope that the downhill slope is not a steep, fast one, because whatever function Taylor loses before surgery, she will most likely not regain after.   

Well, as if that wasn't enough, at about 12:30 p.m., Taylor began to experience severe stomach/chest pain.  Knowing that she has some big issues with her bowel, we prepared to take her to the Emergency Room, although we tried a few things at home to see if we could make it better.  Thankfully the pain began to taper off after a few hours, but we kept the bag packed and had ourselves prepared to leave should the pain return.  We made it through the rest of the day without incident, thankfully.

During the night on Saturday, Taylor came into our room saying she had a headache.  Again, coming from a girl who doesn't complain, that was pretty big.  I sat up with her for a little while, giving her some Tylenol and water, and eventually she fell back to sleep.  The rest of Sunday was quiet... well, as quiet as our house can get.  We did deal with Jade complaining of her arm/hand hurting.  We are unsure of whether it really hurts or if she is just trying to get a little extra attention like her sisters.  There is a fine line, as we have misjudged before and have been incorrect about a complaint. 

Yesterday afternoon, Taylor told us she was cold.  She was right underneath a fan, so we attributed it to that, but at dinner she wasn't eating and actually had goosebumps.  She said that her head was hurting again, and when I felt her forehead, I knew she had a fever.  Her temperature was 101.5, which in not terribly high, but it did tell us something was not right.  She responded well to the Motrin we gave her and she slept well last night (we didn't, as we checked on her about a million times).  All of these seemingly unrelated symptoms have us a bit worried, but that may be because of everything we have dealt with in the past.  We'll definitely keep a close eye on Taylor, but hopefully nothing else will come of this.  She seems to be o.k. today, although she did say her tummy was hurting a little while ago, but I think it was because we were getting ready to do some schoolwork!  :0)  We'll see.

Everyone else is doing fine.  Our surgery date has changed yet again.  We're just trying to figure out our schedule for the summer, because we have a lot going on.  We'll let you know once we have more information.

Have a great week!!

Happy Anniversary, Erin and Jade!!!  Wow, can you believe it has been 4 years since our beautiful little girls were separated at Children's National Medical Center in Washington, D.C.?  What an amazing journey we have been on, and we are absolutely blessed beyond measure to have them here with us today.  Most of you probably don't realize just how rare it is for a set of conjoined twins to survive and make it to this point in their lives.  We have had the honor of getting to know many families whose conjoined twins didn't have the same outcome, and they are in our hearts and prayers daily.  Even at this young age, we talk to Erin and Jade about the conjoined babies that don't get to be with their parents here on earth.  They know these babies' names, and they also know that they are very lucky to be here.  We will never take them for granted, and we never want them to take their lives for granted either.  They have an amazing opportunity to make a tremendous impact in our world, and we want them to reach that potential.  If you have a minute, take some time and go back through our archived photos of the girls before they were separated.  Amazing!!!

We also celebrated another huge anniversary.  Kevin has been in the Marine Corps 20 years today!  I am so proud of you, sweetheart, for serving our country and for making the sacrifices you do.  You put a great deal into your job, and you are exhausted everyday when you get home, but you still find the energy to be a great daddy and an outstanding husband.  Thank you for all that you do!  Congratulations on this big milestone! 

We had the most wonderful opportunity these past few days.  We were invited to the Family Advocacy Day conference in Washington D.C., where we were able to represent Children's National Medical Center in working to gain support for Children's Hospitals around the country.  Yesterday we arrived very early so we could participate in a tour of the city.  Most people might wonder why we would take a tour when we live so close, but it's just like people who live near Disney World -- they probably don't go there very often.  The girls were so excited because we were able to ride in a big charter bus.  They have never ridden on a bus before, so that was a big deal!  The tour probably wasn't that exciting for them, but the bus ride sure was!!  After the tour we had lunch with all of the other families who came to the conference.  It was fun to meet so many great families who understand what it is like to need the services of a Children's hospital.  After lunch we had a meeting to talk about our visits scheduled for today.  We took a little "quiz" about Congress, which Taylor and I completed together, and then they asked for volunteers to give answers.  Taylor raised her hand, and when she was chosen took the microphone, introduced herself and gave the correct answer for what a Hopper is.  We were so proud of her, and she only needed a little help reading the really big words (like representative).  After our meeting we were able to check into the hotel so we could have a little down time.  We stayed at the Marriott on Pennsylvania Avenue, and it was fantastic!  The room was gigantic, and we had the most beautiful view ever.  We could see the Washington Monument, the Lincoln Monument, Freedom Plaza (right down in front of us), and the many other great buildings on Pennsylvania Ave.  We were quite amazed!  It rained for a little while, and after the rain stopped there was a double rainbow over the city.  Absolutely beautiful!  After a short rest, we all went back down to the banquet hall for a festive and fun-filled evening.  We had a kid-friendly dinner, the girls got their faces/hands painted, they had caricatures drawn of them, had their picture taken in front of a green screen and then chose the background (fireworks), they were able to pick out two new toys each, and they got to dance and interact with many other kids.  There was a great musical group playing the entire evening, and we all had such a great time.  We were even able to have dinner with one of our favorite people in the whole world, Ms. Jackie!!  It was so wonderful to see her again.  We also had dinner with one of our new favorite people in the world, Miss Clare.  We want to thank Clare for EVERYTHING, as she is the one who arranged it all for us.  The girls had so much fun with both Clare and Jackie last night.  Thank you, ladies, for caring so much about our little girls.

Today we got up and prepared for our busy day.  We were on our way to Capitol Hill to visit some Congressmen and a Senator, so we had to look good!  When Clare didn't arrive when she said she would, we got a little worried (for good reason).  Poor Clare's car got broken into last night, and her laptop was stolen.  We feel so bad for her!  However, after dealing with the police, she pulled it all together and joined us for the day.  You're amazing, Clare!  Anyway, we were also able to spend the day with Ms. Emily, who also works at Children's and has known us since the girls' separation.  In fact, that was her first week at the hospital.  What a crazy time to start!  We love Emily, and we were glad to be able to spend so much time with her today.  We started the day with the best visit!  We went to see our absolute favorite Congressmen, Representative Rob Wittman, in his office once again.  They were so very welcoming, and it was wonderful to see him and his fantastic staff once more!  We want to thank them all for treating us so well and for taking the time to talk to our family about the importance of Children's hospitals, especially Children's National (to us).  Congressman Wittman really cares about his constituents, and we know that he will do all he can to work for positive changes in Washington and Virginia.  Thank you, Congressman Wittman!  Our next visit was with Congressman Moran, who knows exactly what it means to have a child in the hospital.  His daughter has been battling brain cancer for many years, and she has been treated at Children's National.  We just went in to thank him for truly supporting the hospital as well as legislation that deals with children's healthcare.  After our visits with the Congressmen, we walked over to the Senate side to have lunch with all of the families visiting the Hill.  Two of the mascots for the Washington Nationals baseball team came to visit, so we got a few pictures with them.  We had a very relaxing lunch, and then we had one visit in the afternoon with Senator Webb's staff.   That visit went well, also, although we were hoping to see the Senator.  However, we do understand how busy they are when they are in session.  Needless to say that we were all ready to head home after our last visit.  It was a very exciting and worthwhile two days, but we were pretty exhausted.  We are so thankful that we were given this opportunity, and we want to thank everyone who was involved in making it possible.  When we do things like this, I feel like we really can make a difference!!

As  you can guess, I have many more pictures to sort through and upload.  I'm guessing by the time the girls are... 10!  LOL!  I'll work on it!

I need to go so we can all get some sleep.  Have a great evening!  Thank you for checking on us!

Jade and Erin are done with school for the summer!  Yay!  I'm so excited to have all of my girls back at home with me, although I will miss my alone time with Taylor every day.  We really do get a lot more done, as far as her school work, when we have some time to ourselves.  I will just have to give the girls some work to do this summer in order to keep them all busy.  I've decided to keep working with Taylor all summer, as she loves to learn and it will only help her in the long run.  Erin and Jade are actually sad to be done with school.  They will really miss their teachers, PT/OT, and friends.  Mrs. Amanda said she is going to try to get all of the kids together this summer for a day at the pool, so I hope that happens.  The girls will love it!  They will be with most of the same classmates next year, and they will get to see Mrs. Amanda every day when they get to school.  I'm excited because we've decided to put Taylor into the same school as her sisters.  It is not in our district, but we put in a transfer request.  Hopefully it will be accepted.  It will be so much easier to have them all at the same school, where everyone knows about all of their medical needs, and I will only have to deal with one administration.  We love everyone at Erin and Jade's school, so it is a perfect set-up. 

On Wednesday, Erin and Jade had a "Beach Party" in their classroom.  Taylor and I went so we could participate in the many fun activities.  They had a slip 'n slide, which Taylor loved, Jade tolerated and Erin tried twice.  She was more than happy to just watch after that.  Mr. Paul, her PT, pushed her through in her wheelchair, but she just wasn't into it.  Oh well, at least she tried it.  Jade was so funny, because she doesn't like to get her face wet.  She would walk down the length of the slide and then fall to her knees when she got to the end.  One time, Mrs. Amanda tried to push her down the slide on her stomach, but as soon as the water touched her face, that was it.  She got up, and walked the rest of the way.  I have some pretty cute pictures, which are in line to get loaded after our Kennedy Krieger ones.  So, by the time I have the pictures up, you will have forgotten these little stories that go along with them!  Sorry!

Well, we finally have a date for Erin's surgery.  As is normal for us, we are not going to post the date here on our site.  For the protection of our family, we never announce where we are going to be at any given time.  However, it is closer to the end of the summer, and we will definitely post an update as soon as the surgery is over.  Erin knows she is going to have an operation, and right now she is absolutely fine with it.  I know she will get nervous as it gets closer, but we have learned that our kids really base their reactions on how we deal with things.  As long as they see that we are outwardly calm, it really helps them to stay calm.  I'm sure this is going to be a tough one for us (not that the others were not), because in the forefront of our minds is the outcome of the separation surgery.  While it was an absolute success, and we are truly blessed to have both girls here with us, each day we are faced with the fact that Erin came out of it with a spinal cord injury.  We are not angry at anyone, as there is no one to blame, but it is difficult to see our little girl struggle each and every day.  When she goes into surgery, I know that in the back of our minds we will be thinking about the stroke she had to her spinal cord 4 years ago. 

Our family would like to say two HUGE thank you's to some very special people.  We would like to thank Jennie and Marty Nelson, and we would also like to thank Kim and Bill Meek.  You are all amazing!!!  Words could never express the depth of our gratitude.  Thank you!

We are also excited to tell you that our new friends in West Virginia have now decided to volunteer for Paws4People.  They will get to help with the dogs, which is such a fantastic thing to do!  Thank you Amanda for caring so much and for taking such a big step to help many others.  You guys are the best!

We would like to ask you all to keep another very special family in your thoughts and prayers.  Our friends, Crystal and Matt, are expecting conjoined twin boys.  They have set up a website, so if you'd like to check it out, I'm sure they would appreciate it.  Take a minute to offer them some words of support and encouragement.  While the news from doctors hasn't been very positive, they still have a lot of hope.  As we all know, the doctors don't have all the answers.  As long as there is life, there is hope.  Here is their website:  http://www.miracletwinboys.com  We want to wish their family peace and comfort during this stressful time.

We hope you all have an outstanding weekend.  We have some visitors coming, which should be a lot of fun.  Thanks for stopping by!

Here is a picture of our big girls on their last day of school.  Our love!  XOXOXOXOXO

Whew, we have had two very busy weeks!  We actually spent the last two weeks up in Baltimore, working through our days at Kennedy Krieger for physical therapy and enjoying our evenings at the wonderful Ronald McDonald House.  Both Erin and Taylor had therapy this time around, and they did a fantastic job!  Jade was a great little helper, and she also convinced some of her favorite people to take time out of work to play with her.  I literally took hundreds of photos, so I’m hoping to have a few of them posted before the end of the year!  :0)  LOL

Erin primarily worked on walking in her RGO (with her walker), standing with long leg braces, and walking on the treadmill.  Of course she did many other things, but those were the main focus.  We were lucky enough to have Robin as her therapist again this time.  Initially she was booked, but she was able to free up her afternoon schedule so she could work with Erin.  Thank you Robin!!!  We love Miss Robin, and she does a fantastic job working with Erin.  She also works with our friend Grace, which sadly means that we can never be there at the same time.  Oh well, we will still get to see them when we visit West Virginia.  Anyway, Erin worked so hard, and she is doing an incredible job walking with her RGO.  She went around the entire second floor of the hospital two days in a row.  That’s AMAZING!  Way to go Erin!!  Of course, there was some fun thrown in, as every Wednesday is a cooking day.  The first week we made pancake sundaes with chocolate chip or strawberry pancakes.  The second week we made Oreo milkshakes.  I bet you can guess what we’ve been making since we’ve been home!  Well, at least the milkshakes have been a big hit.  We also want to thank Miss Judith for working with both Erin and Taylor when their other therapists couldn't be there.  They love you!  You are the Wii queen, and you were able to incorporate some physical therapy into some fun outdoor games. 

In the midst of Taylor’s medical issues we are dealing with, she really did well in therapy.  A lot of time was spent trying to get a muscle contraction in her calf muscle, as we have not been able to get one with our stim unit, and her muscle has atrophied to the point where her leg looks like it could belong to her little sister.  Pretty scary!  Anyway, Miss Jess (and Miss Tiffany, Miss Nia, and Miss Amy) were able to finally get a contraction using a different electrical stimulation unit called a Swiss Stim.  This unit sends signals deeper into the muscle, and they were able to elicit a very slight contraction.  Of course, the bad news is that insurance will not cover this new unit, so we will have to pay out-of-pocket for it.  Yikes!  Taylor has to have one, though, or we are going to lose her calf muscle completely.  Because her muscles in her leg and foot have atrophied so badly, Taylor’s bones are rotating into the wrong positions.  Her ankle and foot each have bones that need to be maneuvered into the correct positions, and then we will need to have a brace made that will help to keep them there.  We’re hoping that can happen soon.  She worked a great deal on balance, walking, and stimming her muscles in her right leg/foot.  Great job Taylor!

As always, we have exciting things happen when we go to Baltimore.  Over the past two years, we have established a great relationship with some wonderful people from the Under Armour company.  They make special shirts for Erin to wear underneath the brace on her torso.  Each time we are in Baltimore, they usually come to visit us at the Ronald McDonald House.  This time, we were invited to go to visit them at the factory.  We were all very excited, and the girls couldn’t wait to see where and how the shirts were made.  Needless to say, we had an outstanding day, and we were treated like royalty.  They even got a Care Bear cake and apple juice for the girls and everyone else to share in during their morning break.  It was so much fun.  They took us on a tour of the factory, and we even got to go up to the main room that sits above everything else, where they discuss and devolop new ideas.  Very cool!  They very generously gave us each some Under Armour gear before we left, and it truly has to be the best stuff we own.  If you’ve never tried Under Armour, you really need to give it a shot (no, this is not an infomercial, and we are not being paid to say that)!  Anyway, we want to thank everyone at Under Armour for being so kind and for caring about Erin (and our family) the way that you do.  A special thank you to Ed, Dennis and Ella for all of the hard work you’ve put in to design the right shirts for Erin.  You guys are the best!!

We were able to visit with some wonderful people again in Baltimore, both at the Ronald McDonald House and Kennedy Krieger.  It’s such a blessing to us to have the opportunity to meet so many courageous and amazing people;  we are humbled and inspired by their stories.  We even got to see our friend Jimmy again.  For those of you who haven’t been reading our site for long, Jimmy has a spinal cord injury and is considered a quadriplegic.  He was told he would NEVER walk again.   Well, Jimmy walked over and gave me a big hug when we saw him up at KKI.  Yes, Jimmy is amazing!  Through great determination and hard work, he is walking with crutches, and he absolutely refuses to get back into his wheelchair.  Way to go Jimmy!  Because of you and others who have done it, we know Erin will walk again someday!

O.k., since this has turned into a short novel, I will end for now.  I have so many more things to tell you, but it will have to wait for another day.  I do want to say that the Ronald McDonald House is working on a special project for their website, and we hope to have the opportunity to participate.  I will let you know what it is and when you can see it sometime in the near future.

Have a wonderful week.  This is the kids’ last week of school, so there is much going on.  Plus, the weather is horrendously hot and humid here, so we are doing our best to stay cool.  We hope you are all doing well.

Thanks for reading this entire thing!

Life continues to be extremely busy in our household.  All of the kids have only two weeks of school left.  When I told Jade tonight, she was very upset that she wouldn't be going to school this summer.  She absolutely loves it.  I'm enjoying that now, as I'm sure they won't always love school!

The weather has been beautiful, and we've spent a great deal of time outside.  We're in the small window of time right now where the weather is not too hot during the day to be outside (for Erin).  She overheats very easily, and she becomes miserable any time it is over 80 degrees.  Not to mention that out here on the East Coast, the humidity is constantly high in the summer.  The only time we can be outside during the summer months is when we are at the pool.  I guess I better get in shape!

We are so very proud of Taylor!  She has learned to catheterize herself!  For many of you, it will be difficult to understand the significance of this accomplishment, but it is HUGE.  We have been talking about it for quite awhile, and so today we finally had her try it.  She was able to do it herself on the very first try.  I guess our preparation truly paid off.  This will be extremely helpful when she goes to school next year, and we won't have quite as many things to worry about.  Way to go Taylor!!!

Unfortunately, we also have some bad news.  Taylor is still having some issues that could possibly be an indication of the loss of  function.  There is at least one test we will have done to try to rule it out.  It is frustrating as well as frightening.  For Taylor it is humiliating, confusing, and makes her very sad.  As parents, we wish we could do something to help her, but all we can do is try to assure her that everything will be o.k.  We keep hoping that it will get better, but it only seems to be getting worse.  She just doesn't deserve this.

Everyone else is doing very well.  Erin is working very hard with her therapy, and she is doing fantastic.  Taylor is doing a wonderful job as well.  Jade continues to be a fabulous little girl who loves to help in any way that she can.  She is our snuggle bug, and she is so loving toward everyone.  K.J. enjoys his weekends with his sisters.  He is such a great big brother -- he even reads to the girls before bed (well, when Taylor isn't reading to them).We are just so blessed to have these 4 amazing children in our lives!  We are absolutely thankful to have them!

Oh, I did have a chance to post a few pictures.  Please check them out if you'd like -- they are under Photos: Spring 2008.   These photos were taken a few weeks ago.  You will see Erin in her RGO with her walker (feeling very comfortable standing by herself).  You will also see pictures of the girls during their first performance with their singing group.  Take a look at the one where all of the kids are holding hands and taking a bow.  Jade forgot to hold Erin's hand, and Erin was not very happy about it.  She definitely did not forget during the second performance!  I will post pictures of the second performance sometime next weekend.  I just know I will not have time this week to edit the photos, load them and get them posted.  I hope you enjoy the new ones!

Have a wonderful week!  We hope each day brings many smiles, much laughter, and lots of love!  Sending our love to you! 

Happy Memorial Day everyone!  We want to take a minute to thank all of our military men and women who are serving our country right now, our veterans who made so many sacrifices in the past, and for the many who made the ultimate sacrifice in order to protect our freedom and ensure our rights in this country.  I am so proud of Kevin for being a Marine and for doing the job he does.  I am also very proud of our nephew Jon, who is in the Air Force and flies many missions into Iraq and Afghanistan. 

We had a fantastic weekend, absolutely enjoying the beautiful weather we've been having.  On Friday I had the opportunity to go to the girls' school to help with a project in the classroom.  Mrs. Amanda bought white t-shirts for all of the kids, and she had them each put a hand print on every shirt.  Well, as you can guess, 3 and 4 year olds can't really put their hand prints on the shirts themselves, so my job was to help them.  I painted their hands with fabric paint, and we went around to each shirt to make their prints.  Some of them were interesting and required my full attention, but it was a lot of fun.  Of course, Taylor enjoyed the day in the classroom again, and Erin and Jade loved having us there.  In the afternoon, Mrs. Amanda and Mr. Paul came over to our house for a home visit.  They played games with the girls and helped to adjust Erin's hand bike.  The girls were just excited to have them in our house.  Erin told me last week that she thinks Mr. Paul is really cute!  That was adorable!  :0)

On Saturday we ran some errands.  We then decided to have a picnic on our little deck for dinner.  Erin, however, doesn't like bugs, so she opted to sit in the porch to eat while we sat on the deck.  All of the windows were open, and she was included in all of our conversations, but she was protected from the bugs (which there weren't any, but just the idea of them scares her).  It was fun, and the girls love to do different little things like that.

On Sunday we were invited to our neighbors' house for a barbeque.  It was so much fun, and the food was great!!  Thank you Amber, Burt, Carlo, Dustin and Savannah for a great afternoon!!  We all had a wonderful time!

Today we were invited to another barbeque at the Ronald McDonald House.  The girls love to go there, and they truly feel at home as soon as we enter the building.  We had a great reception and saw all of our favorite people!  We want to thank them yet again for including us in their special occassions.  The thing that made today special was that a company decided the house needed a new built-in grill and so they put one in for them.  The work was completed on Friday, and they came back today to make dinner for all of the families.  We had great grilled food and wonderful company.  Thank you to everyone involved!

We have a busy week ahead.  The girls only have 3 weeks of school left!  Wow!  We hope you had a great weekend, and we hope your week is fantastic as well.

XOXOXOXOXO

As stated in my last post, we did have a very busy weekend with many exciting events.  Before I begin telling you about it, though, I just want to say something.  We want to thank everyone who takes the time to post messages on our guestbook.  It truly means a great deal to us, and those messages often put big smiles on our faces.  Sometimes your words of encouragement are just what we need to lift us up.  I know that in the process of posting, it asks for your e-mail address, and I know some of you post messages with the hope of getting a reply from us.  Unfortunately, we have no access to those e-mail addresses, so we cannot write to you.  We have no way of getting in contact with you, which is sometimes distressing to us.  For Ashley, and others, please send us an e-mail at bucklestwins@aol.com .  We would love to be able to talk to you and help you in any way possible.  And for those of you who have taken the time to e-mail us, and I haven't gotten back to you yet, I truly apologize.  I do make every effort, but sometimes it just does not get done. 

Another very important piece of information I would like to pass on is about our new friends in West Virginia.  A woman named Amanda contacted us a few weeks ago stating that they would like to help Erin to get her service dog.  Amanda has two daughters, Madison and Makayla, and they have also taken this cause to heart.  Amanda told us that they are going to donate all of the money in their piggy banks.  Wow!!  However, prepare yourselves for the next thing:  Madison had her 6th birthday last week, and she decided that, instead of receiving presents for her birthday, she would just ask her guests to bring money to donate to Paws4People for Erin's dog.  AMAZING!!!!  From a 6 year old!!  Madison, I know you don't truly understand the significance of your kindness, but someday when you have a child of your own, you will absolutely see how life changing your decision was.  Thank you from the bottom of our hearts!  Amanda said they raised $90 at the birthday party.  That is truly outstanding; So extremely giving and selfless!!  We want to thank everyone involved, especially this beautiful family who is helping to make the wishes and dreams of our little girl a reality.

We had an extra special day last Thursday, because we had the opportunity to spend the afternoon with some very dear friends of ours.  Angie, Ryan, Mateo and McHale Shaw were in D.C. for some medical check-ups all last week, and they took some time out to hang out with us at the National Zoo.  The girls were so excited to see the boys (and the animals).  I'm not sure which one carried the greatest weight!  The only animals Jade REALLY wanted to see were the elephants.  She LOVES elephants!  That's all she could talk about on our way there.  Taylor and Erin were talking about the other animals, but Jade spoke of only one.  As we began our journey around the zoo, we discovered that only about a quarter of the zoo was open.  They were having some sort of special event, so not only could we not access the best part of the zoo, but it closed at 4 p.m. that day.  Needless to say, we could not see the lions, tigers, and bears (oh my), but we also could not see the elephants!  Poor Jade, she was so sad!  We did get to see one elephant from very far away, and it seemed to satisfy her, so that was good.  Despite not being able to see the entire zoo, we all had a great afternoon, and we want to thank Angie, Ryan and the boys for spending time with us.  It was wonderful to see them again -- the boys are absolutely adorable! 

On Friday, after school, the girls and I spent our time cleaning and getting ready, because my mom came to town for the weekend.  Taylor, Erin and Jade had another performance for their singing group, and my mom really wanted to be here for it.  The girls adore her, and we were all so happy she came.  Kevin picked her up from the airport, and the girls could hardly contain themselves when she got here.  We had so much fun with grandma!!

The performance on Saturday was even better than the one last weekend.  It was at an amphitheater in a beautiful park, and the day was just perfect.  Everyone did such a great job and the solos were fantastic.  Taylor's solo was outstanding, and we were just so proud of her!!!  Kevin caught it all on video, and I took another few hundred pictures, so hopefully we can post some new material soon.  Grandma treated us all to ice cream after the performance, which was a perfect ending to a perfect day. 

We were supposed to go to a berry farm to pick strawberries on Sunday with Erin and Jade's class, but it rained.  We just enjoyed the day at home, relaxing, and spending precious time with grandma.

Erin did a great job walking in her RGO on Monday.  She was very excited that she did so well.  She walked around to all of the stations in her classroom where they do different activities throughout the morning.  I would definitely call this one a success!!  Great job Erin!!  Thank you Mr. Paul, Mrs. Amanda, and everyone else for making it such a positive experience!

Yesterday, the girls had to miss school, because Erin had another appointment with her plastic surgeon at Children's Hospital.  It was decided that she does need to have surgery to remove the bone and cartilage mass in her chest.  As we were discussing the surgery and asking questions, it was also decided that it is time to remove the Gortex patch that is in her abdomen (holding it together).  They had never planned to leave it in there forever, and since Erin will already be having surgery on her chest, the surgeons think this is the best time to take it out.  The patch will be removed and the abdominal muscles will be brought together and stitched closed.  This will help Erin in her quest to regain function and walk someday.  You never realize how much you use your abdominal muscles until you don't have them.  So, now we are working with the surgeons to come up with the best date possible.  This is not an emergency procedure, but since there is a risk of tissue and skin damage underneath her brace, Erin does need to have the surgery within the next few months.  Kevin and I will look at our schedules, factoring in Kennedy Krieger visits and other summer activities, to decide when this should be done.  We will let you know when we have more information.

After leaving the hospital, we had to drop my mom off at the airport, and then we headed off for our physical therapy appointment.  Whew, what a long day!!  We want to thank my mom for everything!  It was wonderful to have you here, and we can't wait to see you again.  We love you lots!!

Oh, Taylor wanted me to share her exciting news:  her first tooth came out last night!  She has been working on it for months now, and we finally pulled it out right before bed.  She was the most excited girl in the world, and she couldn't wait to put it under her pillow for the tooth fairy.  This morning when Kevin and I went in to wake them up (Taylor has been sleeping in her sisters' room), she was sitting up in her "bed" with tears in her eyes.  She thought she had literally lost her tooth, and she was frantically searching her blankets for it.  I pointed out the dollar next to her pillow and told her that the tooth fairy had already taken her tooth and given her a whole dollar for it.  It took a few minutes to regain the excitement, but she has been on a high since then.  She is doing a lot of smiling, trying to show everyone that she has a tooth missing.  Such a cute girl!! 

That is all I have time for right now, but I will try to update again soon.  We hope you are all having a wonderful week.  Please take care!  And remember, if you want to get in touch with us, send an e-mail to bucklestwins@aol.com.

Yesterday was a fantastic day!!  The girls were excited to go to school, because it was canceled on Monday (the roads were flooded from all of the rain we received).  While at school, Erin told Mrs. Amanda that she wants to walk in her RGO using her walker on Friday!  Wow, that's HUGE!!!  We are definitely making some progress.  Yay! 

After school, we came home and baked chocolate chip cookies.  The girls love to bake them far more than they love to eat them, but we had a great reason this time.  It was their class party for singing class, and everyone was encouraged to bring their favorite food or treat.  The word party just evokes such excitement, and we definitely had that going on.  Erin kept telling me it was time to go... ALL afternoon.  At class, they did a run-through of the show first, and Taylor did a great job with her solo once again.  You could tell that the kids were totally keyed up and couldn't wait to be done so they could PARTY.  After the rehearsal, Ms. Tammy told the kids that if anyone wanted to sing a solo, they could do that.  Erin and Jade raised their hands, and Ms. Tammy asked them if they would like to sing together.  They said yes, and in my mind I was wondering if they would get up in front of all the kids and freeze up.  Many families were there, so the room was pretty full, and I just wasn't sure if the girls would feel comfortable enough to sing.  They sing ALL THE TIME at home, but it's quite different when you have an audience.  The girls have made a lot of friends in class, and a bunch of them volunteered to sing with Erin and Jade, just to make them more comfortable.  Taylor, who wanted to sing her own solo, actually gave it up just to sing back-up for her sisters.  Thank you Taylor!  However, let me just say that my worries were unfounded.  Erin  and Jade got up to sing, and they chose "Nobody's Perfect" by Hannah Montana.  As soon as the song started, they both put the microphones up to their mouths and belted out the song.  Erin was actually so loud that Ms. Tammy had to turn her microphone down!  I just sat there dumbfounded, not believing what I was hearing.  I looked around and saw the same expression on other parents' faces:  Was that voice really coming from that little girl?  It was the greatest moment ever, and I didn't even have my camcorder!!!  Seriously, I couldn't believe I didn't have it.  I missed capturing an amazing moment in their lives!  It was so much fun to see them up there, though, and I could see how proud they were.  Go Girls!

After eating mostly junk food, we had to rush home for a meeting with our friends from Paws4People.  They came over to talk to us about their program and the dogs that are possibly available for Erin.  They have had some positive changes in the past few months, although because of these changes, they have fewer dogs at the moment.  They brought along a service dog named ELLIE, who is being trained for a little girl named Amanda.  The girls fell in love with the dog, and thoroughly enjoyed playing with her.  I'm not sure our cat, Ninja, felt the same way, but he definitely wanted to make sure the dog knew who was in charge.  It was really funny to watch!  Anyway, hopefully Erin will be able to receive her dog sometime next February or March.  It all depends on if she bonds with one of the dogs scheduled to graduate at that time, otherwise they have six new puppies coming into the program very soon.  It actually takes between 18-22 months to fully train the dogs, unless they are being trained for something even more sophisticated, which would take even longer.  I found out that it costs around $30,000 to train a service dog.  WOW!!  We've got some work to do!  Anyway, it was a wonderful visit/meeting, and we once again want to reiterate how absolutely blessed we are to be involved with this program.  I posted some pictures we took last night of the girls hanging out with ELLIE.  You can see them on the "Erin's Service Dog News" page.  Thank you Kyria, Terry, and Diana for making the trip to see us, and for caring so much about our girls! 

As our friends from Paws4People were getting ready to leave, a bug flew in the door as they walked out.  For some reason, probably because they were so tired by this time, Erin went into a panic (literally).  By the time I got the bug, our friends were gone, and Erin became inconsolable because she had wanted to see them leave.  As she was calming down from that, she started crying harder again, because she decided that she wanted CLARK (a service dog in training) as her service dog.  We had been talking about CLARK last night, because he is a male dog who may need a male owner for him to really listen.  Sometimes they need that Alpha male.  CLARK may not be a possibility for Erin just for that reason.  So, of course, she decided that is the dog she wants!  Silly girl.  I finally got her calmed down from that, and she went to sleep very quickly.  It was a full day with lots of excitement and activity.  She still talked about CLARK today, but I tried to convince her that once she met and spent more time with the dogs, she would just know which one was hers.  They would bond, and the dog will know too.  It will be exciting, and whoever the dog is, she will love him/her!

Today was a great day too, just not as many exciting things to talk about.  Erin walked in her RGO, although she wasn't as thrilled.  Oh well, it's something she has to do.  We have a very busy weekend coming up, so I will have much to talk about early next week.

Take care!

Happy Mother's Day!!!  First and foremost, Kevin and I would like to thank our strong, wonderful, beautiful and amazing mothers for all that you have done for us and our family.  We are deeply grateful for the opportunity to have you in our lives, and you have made us better people because of who you are.  Thank you for supporting us through all of the moments in our lives, good and bad, intelligent and not so intelligent, joyous and sad, that have helped to shape us into who we are today.  We know that we have put you both through some tough times, but we want you to know that we love you and appreciate you with all that we are and all that we ever will be. 

To all of the other mothers out there who are reading this, may your Mother's Day be filled with the beauty and wonder that each day brings when you have a child in your life.  You have the most important job in the world!  Celebrate the amazing little moments that might otherwise slip by us as we rush through our busy lives.  Enjoy your day, and know that the job you do in raising your child/children has a profound impact on their lives.  They will carry your wisdom and love with them for the rest of their days.  Happy Mother's Day!

Last week, as the girls were signing the cards for their grandmothers, Taylor asked me when Father's Day is.  She then asked me if there is a Children's Day.  My Answer?  Every day is Children's Day!!

Yesterday was the most fantastic day!!!  The girls had their first performance, and it was held at a community center for adults 55+.  All of the kids looked absolutely adorable in their costumes, and they were so excited.  I had to fight back tears of joy from the time we arrived until the moment we left.  It was just such a perfect example of why we are so thankful.  Four years ago, we didn't know if we would ever see our little girls participate in something like this, and there we were yesterday getting them all dressed up and fixing their hair so they could perform in a show.  Such a blessing and a miracle!  It was so much fun to see them singing and dancing, and Taylor did a wonderful job with her solo.  They have another performance this Saturday, which I'm sure will be even better. 

The other thing that was so exciting yesterday happened in the afternoon.  After Erin was done riding her bike (FES), I told her I was going to put her in her RGO.  I gave her the choice of using her crutches or her walker, and she excitedly chose her walker.  She did not complain one time, and she actually enjoyed walking in the RGO.  She walked through our foyer 3 times, stopping at the door to watch her daddy mowing the lawn.  She seemed so much more comfortable with the walker, and she was just such a happy girl.  Erin asked if she could use her walker at school, and I happily agreed.  What a relief!!  Maybe she just needed the comparison of the walker and the crutches for her to appreciate the walker that much more.  She does a much better job with it, and she can do more of the walking on her own.  I know she feels more stable.  Kevin and I decided that she has plenty of time later to learn to use the crutches.  Right now, we want and need her to walk, so we will do whatever it takes to make that happen.  Great job Erin!!!!

Today has been wonderful for me.  Kevin got up with the girls this morning while I took a shower.  After I got dressed, they all  came running in with beautiful pictures they drew and a perfect card.  They just couldn't stop hugging me and telling me that I am the best mom in the whole world.  That absolutely made my day!  These precious little girls have brought me more joy than I ever thought possible, and I am so thankful to be their mom.  K.J. gave the 15 year old version of saying "Happy Mother's Day", and for that I am thankful too.  I love having him in my life, and I am blessed to have the opportunity to be in his.  We all made a big breakfast together, and the world stopped for a short while as we sat down and ate.  Kevin took K.J. to spend the day with his mom, and the girls and I played games while he was gone.  We just have so much fun together, and I truly love their imaginations!

I am off to enjoy the rest of my Mother's Day!   I hope everyone takes the time today to tell their mom or mother-figure just how much they mean. 

We would like to wish Mateo and McHale Shaw a very Happy Birthday (yesterday)!  They are now 2 years old -- WOW!!!  These amazing little boys have overcome so much, and they continue to beat the odds each day.  Happy Birthday, boys!!!  We can't wait to see you!  You can all check up on these cuties at:  www.caringbridge.org/visit/mateoandmchale

Oh, I was able to upload a few pictures, and I will try to get a few more up later.  Have a wonderful day!!

I was kind of rushed earlier when I wrote the update, and I have a few more things to add.

First of all, I have written before about the amazing staff at the Baltimore Ronald McDonald House.  I received a phone call today that is a perfect example of why they are so wonderful.  Last night we had some terrible storms go through our area.  We were under a tornado warning for over an hour, and Kevin and I were ready to grab the girls in a rush for the basement.  We did have a tornado touch down in our county, just a little bit south of where we live.  I have to say that I was a bit worried as I listened to the thunder and watched the lightening flash across the sky.  A few times it lit up the sky to show a green background (not good).  Anyway, we were very lucky as the tornado seemed to skip over our immediate area.  This afternoon, one of the outstanding women who works at the Ronald McDonald House called to say that they had heard about the storm and were worried about our family.  She just called to check on us and make sure we were o.k.  Wow!  I felt like they had reached out with a giant hug!  Thank you Susan, and everyone else at RMH Baltimore, for thinking about us and being concerned for our safety.  We love you all!

Erin's IEP meeting went extremely well this afternoon.  We met with the principal, Mrs. Amanda (Erin's teacher), Mr. Paul (Erin's Physical Therapist), and Ms. Janet (Erin's Occupational Therapist).  They are all so wonderful, and they truly care about Erin achieving everything to her fullest potential.  We can't thank them all enough for everything they do for both Erin and Jade.  We are lucky to have the opportunity to work with them.  We even talked about Erin's service dog being at the school next year, but all formal discussion of that is on hold until our governor puts together the legislation that would allow it to happen.  The biggest concern for them is allergies, but we'll have to see what we can come up with.  We also brainstormed some fundraising ideas, and they have some great ones.  Boy, am I lucky to know them!!!

I will do my best to post some new pictures this weekend.  No promises, but I will see what I can do! 

I didn't get to tell you about the fun we had last weekend.  Taylor recently received a new bike (with no training wheels), and she has been so excited to learn how to ride it.  On Saturday, we gathered up the girls and their bikes, and we went to a local commuter parking lot that was empty.  We brought Erin's arm-powered bike, Jade's bike with training wheels, and Taylor's new bike.  We also had to bring Erin's wheelchair, because we didn't know how long she would want to ride.  It was pretty windy, so Kevin and I were a bit concerned, but everyone had a great time.  Jade was absolutely amazed and ecstatic that she could finally ride her bike.  Erin hasn't been on her bike in a while, and she can now ride completely by herself without help from us (well, we help a little in turning), and Taylor worked really hard to learn how to ride.  Because her right leg isn't at strong, she is unbalanced when she pedals.  This is something she will have to overcome, but I know that she will be riding by herself in no time.  Kevin and I took turns running through the parking lot with her, although I think she was ready to be done before we were.  In fact, it seemed that all the girls were far more interested (over-all) in the fuzzy caterpillars crawling across the ground than anything else.  Oh well, it was fun.

Poor K.J. ended up staying home that afternoon, because his allergies were bothering him.  When we got home his temperature was 102.6.  He didn't have any other symptoms of anything, and after taking some Motrin, the fever came down.  We never really figured out what it was, but it's definitely no fun to be sick on the weekends -- it's much better to have it happen during the week when you can miss school!    He has been doing fine all week, thankfully.

Yesterday we spent all morning at the orthotist having the girls braces adjusted.  Erin needed work done on her AFO's (Ankle Foot Orthosis), her TLSO (ThoracoLumboSacral Orthosis) and her RGO (Reciprocating Gait Orthosis).  Taylor needed an evaluation on her current brace.  After looking at it, and watching her walk in it, a number of people agreed that the brace was a detriment to her.  Her tibia is actually rotating as she walks and it juts out at her ankle.  It's pretty disturbing to watch.  Part of the reason this is happening is that her calf muscle and her achilles tendon are almost completely atrophied (wasted away).  We're doing everything we can to preserve them and build them back up, but we're not having much luck.  Anyway, the brace she was in was just not working for her, so we need to have a new one made.  In the mean time, she is not supposed to wear the old brace at all.  The appointment started at 10 a.m., and we didn't leave there until 12:50.  We want to thank Mark for working through his lunch hour in order to make sure our girls were taken care of.  Yet another fantastic person we are blessed to have helping us.

Taylor and I went to Erin and Jade's school this morning for "Muffins with Mom".  They had special songs planned, and all of the students made beautiful Mother's Day gifts.  It was a wonderful morning, and it was so much fun to spend the day with the girls at school.  Taylor loves to go there, and she is able to participate with the other kids.  Thank you, Mrs. Amanda, for another fantastic day!  We have to head back to school this afternoon for an IEP meeting for Erin, so that we can adjust her goals and make sure she is achieving each one set before her.

We hope you have a wonderful weekend!  The girls have their first performance, so I'm sure I will have many more pictures to post (that's after I post the many others waiting to be uploaded).

Lots of love!!

I really need to update more often!  I have so much to talk about, but I know I won't get it all in tonight.  I will try to talk about the biggest things first, and then I will fill you in over the next few days about everything else that happened.

Last Thursday, we were able to schedule an appointment for Erin to receive a CT scan on her chest.  It was a relief to have it done so quickly, and we don't mind CT scans at all.  They are quick and easy, and Erin did not have to be sedated.  She had to lie very still on a table, and they wrapped her up in a nice, heated blanket.  I told her it was like a cocoon, but she corrected me and said, "no mommy, it's called a chrysalis".  Ha!  They take me by surprise every day!  Anyway, after her scan was done, the doctor was called in to check the scans to make sure they got what they needed.  Dr. Bulas has known the girls since before they were born, because she performed a fetal MRI on them when I was still pregnant.  She did all of their tests and scans before they were separated, and she was in the O.R. during the separation surgery.  She was the one who did the ultrasound on the girls' liver as they were cutting through it to make sure the surgeons didn't sever any major arteries.  It is so comforting to have doctors that know our children so well.  She noticed some calcification in Erin's heart that hasn't been there before, and she said she would discuss it with her cardiologist.  She also said she would discuss the results of the CT scan with Dr. Boyajian, Erin's plastic surgeon.  We are so lucky to be involved with Children's National Medical Center in Washington D.C., because they truly take care of our children.

Yesterday was an absolutely exhausting day.  We woke up at 3:45 a.m., because we had to be at Children's Hospital by 6:30 a.m for Taylor's MRI.  She had to be sedated, but she doesn't mind that part at all.  She actually gets really excited about breathing through the mask, because they make the air smell like bubble gum.  Last time she had an MRI (October), they let her keep the mask, and for days afterwards she would take it out and breath through it (hoping the smell would still be there).  She's so funny!  I used to cry every time one of them had to be sedated, but I guess I'm used to it now.  I still get nervous, but at least I don't cry.  I really feel for those parents that are going through it for the first time, because I clearly remember that day.  Anyway, while Taylor was having her MRI, Erin had x-rays on her legs.  The doctors wanted to see how her bones look, because she has osteoporosis due to her spinal cord injury.  She has DEXA scans, which measures the density of her bones, but the data from her legs measurements was unreliable, so an x-ray is the next best thing.  While Erin was having her x-rays, Taylor came out from the MRI, so Jade and I went in to sit with her while she was waking up, and Kevin stayed with Erin.  They came in when they were done, and Taylor was just trying to eat a popsicle.  As soon as they were sure she was o.k., we had to rush off so Taylor could have a renal/bladder ultrasound.  At that point, we weren't even half-way done with our day.  After a quick lunch, we were off to Spina Bifida clinic.  Even though neither Taylor nor Erin has Spina Bifida, they are seen at that clinic because all of the doctors they need are there.  We checked in to the clinic at 12:00 p.m., and we didn't leave the hospital until 4:45 p.m.  It makes for a really, really long day, but it is so worth it to be able to see 4 of their doctors in one day.  We saw the Urologist, Physiatrist (doctor of physical medicine), Neurosurgeon, and Orthopedic surgeon.  They are all fantastic doctors, and we are so blessed to have them!  As you know, we have some big concerns about Taylor, and it was a relief to be able to see her Neurosurgeon.  We've said this in the past, but we just have to say it again:  Dr. Keating is the most caring, thorough, phenomenal doctor we have ever encountered.  We know that he takes care of our girls as if they were his own daughters.  We want to thank him for our visit yesterday.  He was able to calm our fears (as much as they can be calmed), because we know that if she starts to go downhill quickly (meaning she is losing function), he will do whatever he has to do to try to correct the problem.  After he looked at her MRI, he said that she is clinically tethered.  Her spinal cord is being held down again, but as of right now she is not doing too badly.  She is not displaying any major symptoms, although the things that were going on with her last week could very well have been some mild ones.  Kevin and I will continue to keep a close eye on her each day to watch for any loss of function from her waist down.  She will need to see him again in 3 months, unless things start to go bad before then.  Dr. Keating is excellent about making room in his schedule for patients that need to be seen immediately.

Our visits with the other doctors went very well.  There was a bit of problem solving concerning Taylor's brace, and we had quite a few questions concerning Erin's back and chest.  We still haven't had a chance to talk to the plastic surgeon, but we will see him again soon.  One of the other doctors mentioned some calcification on top of her ribs, by her heart, so we will see what Dr. Boyajian wants to do about it.  It is causing some problems with the brace Erin has to wear on her torso.  We also found out that Erin has mild scoliosis, but the curve is not worrisome yet.

After our exhausting day at the hospital, we had to rush back because the girls had their dress rehearsal for the upcoming performances.  We had to get them changed at the hospital, and we went directly to singing class.  During Taylor's solo, she sounded really hoarse, and the teacher made a comment about it.  She understood, after finding out how early we had to wake up, and what a long day Taylor had.  After class ended at 7 p.m., we still had to eat dinner.  Let me just say that we all fell into bed last night.  I couldn't wait to go to sleep!  Erin woke up in the night, saying her back was hurting, and I barely remember going in to rub it.  We're glad that day is over!

We have a few other things going on this week.  I will try to do a better job of posting updates, because I just make it harder on myself when I wait too long.

We do want to say a HUGE thank you to Amanda, Makayla, and Madison from West Virginia for doing so much to help us raise money for Erin's service dog.  Makayla and Madison are saving up their own money from their piggy banks to donate to Paws4People, and Amanda has spoken to her church about Erin, and it seems there are a few people who wish to help.  It is so very humbling to know that people we have never met are willing to do so much for our daughter.  We want to thank them from the bottom of our hearts for their tremendous efforts.  We can't wait to meet you all someday, so we can thank you in person!  You are all amazing!!! 

Thank you so much for checking on us.  We love you all!

I will start with the most exciting news first.  Last week at singing class, the teacher announced the soloists for their upcoming performances.  Taylor had auditioned for solos, but Jade and Erin chose not to.  As they were rehearsing all of the songs, Ms. Tammy told the group who would be singing the solo for the next song.  When she announced Taylor's name, I was so excited that I could hardly stand it!!  I sent a text message to Kevin immediately (he was still at work) to tell him the wonderful news.  Taylor went up to the microphone and sang her solo (a song from Beauty and the Beast), and of course I had tears in my eyes.  The pride was overflowing!  She wanted to get a solo part so badly, and she worked really hard in practicing the songs.  As we were getting in the car after class, I told Taylor how excited I was for her.  She looked at me and said, "For what, mommy?"  I said, "For getting a solo!"  Taylor said, "I got a solo?"  It was the most adorable (and funny) moment we've had in a long time!  She had no idea that she got a solo.  She just thought she got called up to sing.  I guess that also shows that she wasn't really paying attention when her teacher was talking earlier.  Such is the excitement of being in a class full of new friends!  We're so very proud of her, and we can't wait to see the performances!  Great job, Taylor Joy!  As a special treat, Kevin and I took Taylor out to breakfast at IHop on Friday when he had the day off.  She loved it, and now she keeps asking if we can go out for breakfast again sometime. 

The girls both had therapy on Tuesday, and they did well.  Erin used her long leg braces, and Ms. Chrissy was very happy with how well she can stand. 

Taylor has been having a few issues that make us wonder if her spinal cord is already retethered.  It strikes fear in my heart, as each surgery has caused her to lose function from the waist down; however, if it is retethered, we have to do something or she will be paralyzed from the waist down eventually.  Not much of a choice, but we have to choose the lesser of two evils.  We will continue to watch her closely, and she is going to see her neurosurgeon very soon, as well as have an MRI.  Let's hope it is nothing.  She now understands when she is having symptoms, and Taylor gets pretty worried, too.  The last hospital stay and recovery was pretty tough on her.  We'll let you know as soon as we know something.

We took Erin to see Dr. Boyajian, her plastic surgeon, today.  Her chest wall has changed very quickly, and we are worried about the implications.  When he looked at her chest, he definitely agreed there have been some big changes since he saw her in January.  After some discussion, he ordered at CT scan so we can see what is going on in there.  The bottom line is that she will most likely need surgery within the next few months, although we won't know for sure until after the scan.  Again, we will keep you informed.

I have uploaded some of the pictures from our trip to Kennedy Krieger in March and April.  I'm so far behind with the pictures that it is a little overwhelming, but I will do my best to catch up soon.  Enjoy the new pics.

Have a great week!

I have created a new page to give updates about Erin's service dog.  We really need to start raising money for her dog, and I have to get myself in gear. Please check out the Erin's Service Dog page, as I will try to post updates there as well.

Our friend Grace is still in the hospital battling pneumonia.  She is still on the ventilator and is exhausted from her struggle.  Take some time to leave them a note of encouragement -- we know how much that means to us, especially in tough times.  We are so blessed to have all of you in our corner, and I'm sure the Meek family would truly appreciate a few extra prayers right now as well.  Please check out her site at:  www.caringbridge.org/visit/gracemeek

Our week is going well.  I took Erin's wheeled stander to school for her yesterday, and she loved having it there.  She didn't spend any time in her wheelchair at all, apparently!  Oh, just to clarify about her RGO...  Erin just doesn't like to be in it.  She knew ahead of time that we were bringing it, and that she would have to walk while at school; however, Erin never likes to spend any time in it.  She is not yet independent in the brace, therefore it frustrates her.  She is not embarrassed by it, she just really dislikes it right now.  We know how important it is for her to learn how to use it independently, which definitely doesn't happen overnight (much to Erin's chagrin).  She will get there, and part of the process is for her to walk while at school.

We have a busy day ahead of us, so I have to get going.  Thank you for taking the time to stop in!!

First, I want to send lots of love and prayers to our dear little friend Grace Meek.  She is in the hospital right now battling pneumonia, and I'm sure she needs all the support she can get.  Her family had a pretty bad scare with her in the middle of the night, and a frightening ride to the hospital in the ambulance.  This is one of the worst aspects of spinal cord injuries -- the secondary medical issues such as pneumonia, urinary tract infections and pressure sores.  Grace cannot cough up all the junk in her lungs, which is a recipe for disaster.  Please stop by and give her some words of encouragement.  The Meeks are one of the greatest families we have ever met, and we hope that Grace recovers quickly and can go home soon.  Get well, Grace!!!

I want to thank those of you who took the time to write an encouraging note about my stem cell research entry.  As you can tell, it is something I am very passionate about, and I just want people to make informed decisions about something so important. 

I have a funny little story about Taylor.  On Thursday night, Kevin came home from work and told the girls he was going to take them somewhere with him after dinner.  Of course, they were just dying to know where they were going, but he would not tell them.  Because it was a surprise, they associated it with something "special".  They all built it up in their minds as something exciting.  When we arrived at Home Depot, they still kept asking what the surprise was.  As we were walking through the store with Kevin, Taylor again said, "Daddy, what is the surprise?"  When he told her we were there, she said, "well, this isn't very fun."  I just started laughing, because obviously a little girl's definition of fun and a man's definition of it are completely different!!  I tried to explain to her that he never actually said that we were going somewhere fun, he just wanted to spend some time with his 3 girls.  Actually, Erin and Jade had a great time playing in the aisles (it was pretty quiet there that night), so they thought it was great.  They just love to go places, especially with daddy, and Taylor did end up having fun with her sisters.  So, as an added bonus for the evening, Kevin bought everyone some ice cream.  I'm certain everyone agreed that that was fun! 

On Friday morning, I took the girls to school, and Taylor and I accompanied them to their classroom.  We brought Erin's RGO and crutches so we could show everyone how they worked.  Erin was excited that we were in her classroom until she learned that she was going to be walking in her RGO that morning.  She doesn't always like to wear it, because it is A LOT of work for her.  Let me just say that she was pretty upset as we had her walk around her classroom.  I hope she will do better in it when I am not there, as is often the case with kids.  She pulled out her arsenal of complaints, hoping I would feel bad for her and take her out:  "my back is hurting", "I'm itchy"....  Unfortunately for her, we don't give in to those anymore.  It's so good for her to walk in the braces, and she just doesn't realize how important it is. 

As I was getting ready to leave the classroom, Mrs. Amanda (Jade and Erin's teacher) told Taylor that she could stay for the rest of the morning.  The look on Taylor's face was absolutely precious!  She was so excited and couldn't believe her luck!  She can't wait to go to school next year, so any time that she can spend in the classroom now is "the best thing ever!"  As I drove away alone, I wasn't quite sure what to do with myself.  I mean, I always have things to do around the house and have errands to run, but I never do them alone!  When I picked up all three girls from school, I saw the biggest smiles ever on their faces!  So cute!  Thank you, Mrs. Amanda, for allowing Taylor to stay at school and for including her in your activities.  You have no idea what that meant to her!!!

On Saturday, the girls had rehearsal for their singing class.  They were recording their music for the shows.  The kids range in age from 4-14 (I think), so you can imagine what a challenge it was to keep them all focused and quiet when they weren't singing.  Miss Tammy did a fantastic job, and the girls had a great time!  I helped out with group 1 (the youngest kids), and I really had to hold back my laughter sometimes.  They seem to have an endless supply of questions, even when they are supposed to be quiet, and one question just leads to another and another.  It was a fun day! 

We want to thank K.J. and our nephew Derek for helping us out this weekend!  You guys are the greatest!  We also want to say Happy Birthday to our nephew Dustin!  We love you and hope you had a wonderful day!

Oh, before I forget for even another second, we also want to thank Michelle from Las Vegas for sending the girls some things about Titanic.  She went to an exhibit and picked up some great things for them.  Thank you so much!!!!!

Have an outstanding week!  Lots of love from us to you!

After my last entry about embryonic stem cells, I thought I would give you a quick update about our family.

Erin and Jade are really enjoying being back at school this week again.  They have been able to play outside at school, and then we spend a few hours each afternoon playing outside at home.  The weather is gorgeous, and we are taking full advantage of these opportunities.  All of the girls love playing outdoors!  That's so fantastic. 

Taylor is doing great with her schooling.  She is like a sponge, and she just soaks up information as quickly as I can give it to her.  It's fun to teach her, but she is definitely excited to go to school next year and make friends.  I guess I just don't quite cut it in that department! 

K.J. is doing great.  I know he is ready for the school year to be over, and he is really looking forward to getting his driving permit.  I can't believe he will be 16 in September.  Wow!  He is doing well in school, though, and he continues to work hard.  The girls adore him more than ever!  They always want to be where he is.  Poor guy!

Kevin and I are doing well.  We work hard each day to make sure our children have everything they need and are loved beyond what you can imagine.  We are so blessed!

Thank you for joining us once again.

I want to start out by talking about an issue that I think many people truly don't understand.  The issue is embryonic stem cell research.  This is a very controversial topic, and I have spoken about it before on our site.  My intention is not to upset anyone, but hopefully I can raise awareness and help people learn the facts about stem cell research.  However, just to be clear, the Christopher and Dana Reeve Paralysis Act does not in any way address stem cell research, so you can support it without fear of going against your morals and values.

The biggest misconception about embryonic stem cell research is that people think the embryos are taken when someone has an abortion.  That is completely incorrect.  Embryonic stem cell research has NOTHING to do with abortion.  Here is the process in which embryos could be obtained:  when a couple needs help in having a baby, they go to a facility to try invitro fertilization.  The process involves taking eggs from the woman and sperm from the man and creating embryos in a test tube.  When the embryos are at the correct stage, the couple can choose how many they would like implanted in her womb, and the rest of the embryos are frozen.  The couple can choose to keep them frozen for future use, if, for instance, the first treatment didn't work or if they would like to have more children later on.  When the couple has used all of the embryos they would like, they are given a choice.  They can discard (throw away) the remaining embryos or they can donate them to other couples (for "adoption") who cannot, for whatever reason, use their own eggs and sperm.  There are many couples who choose not to donate them to other families, because they just can't deal with the fact that, if the implantation works in someone else, they would essentially have another child (genetically speaking), somewhere out there.  We wish there would be a third choice.  For those couples who do not wish to donate their embryos to another family, and they just don't feel right in throwing them away, they should be given the choice to donate them for research.  In this way, they could be helping literally thousands of people to someday lead much longer, healthier, happier lives.

I know there are many people against embryonic stem cell research.  You need to know that when they are referring to these embryos, they are really talking about a group of cells.  It is not a baby yet.  It does have the potential to be a baby, but it has never been implanted in a woman.  If you are looking at morals and ethics, ask yourself what is more morally correct:  throwing away the embryos or using them to help thousands of people?  Do you know anyone who has Multiple Sclerosis, ALS, a spinal cord injury, Alzheimers, Spina Bifida or a whole host of other diseases and disabling conditions?  This research could help to cure them someday.  Do you know what a miracle that would be?!

There are other types of stem cells, and great work is being done with umbilical cord blood today.  Please check out these sites for more information about stem cells research:

http://www.kqed.org/quest/television/view/326?gclid=CNis_PLn4pICFQQtHgoduhcTcA

http://isscr.org/public/faq.htm

I am not trying to impose my views upon you, but I do want everyone to make an informed decision when choosing to take a side on an issue.  Find out the facts for both sides before making up your mind.  Please don't go by just what I tell you or what someone else says, find out for yourselves.  The facts are out there and they speak for themselves.  As a mother, I cherish life, and I cherish my children.  I would not be speaking in favor of something that would kill an individual.  Life is sacred. 

I want to thank those of you who wrote to us with questions about the Christopher and Dana Reeve Paralysis Act.  One of the specific questions being asked is about whether it supports embryonic stem cell research.  The short answer is no, but you can learn much more about the CDRPA by going to this website:  http://www.christopherreeve.org/site/c.geIMLPOpGjF/b.1029341/k.B167/CDRPA.htm  .  You will be able to click on a number of links that answer FAQs, and you can even see the full text of the bill.  This is a very non-controversial bill that must be passed in order to help thousands of people dealing with paralysis.  Please feel free to bring up any more questions that you may have; if we don't know the answers, we will find them for you!

Well, I have to say that we're all a little bit exhausted, but we're excited about our adventures over the past three days.  We went to the Working2Walk conference in Washington D.C. where we heard amazing speakers and met up with some wonderful friends -- Melissa Pitts, Alex and Ryan (and made many new friends as well).  We were able to hang out with all of the fantastic people from Kennedy Krieger Institute (a huge thanks to Becca for playing with the girls and taking them outside and to Phyllis for letting us use your room for a little while) and RTI (they had a huge display with Erin's picture as she rode the bike -- too cool).  It was exciting (and sometimes discouraging) to listen to some of the top researchers in the field of spinal cord injury treatments, as they continue to forge ahead and break new ground.  If you ever have time, google Dr. Hans Keirstead and Dr. Wise Young.  Amazing men with brilliant minds and hearts of gold!!!  I wish all of you could have been there to listen to what they had to say, because I think you would become as passionate as we are about helping in any way we can to fund this research.  They are so close to finding the combination of treatments needed to help Erin, Nick, Alex, Grace, Alec, and the thousands upon thousands of other people with spinal cord injuries to walk someday.  We can get there, but it's going to take a great deal of effort from everyone, not just the scientists, to make it happen.  You may be asking, "well, what can I do?", and there really is an answer.  One of the easiest things you can do is contact the senators from your state.  They each have websites, but you can find out about your government leadership here:  www.congress.org   On the left side of the page, there is a box that says, "My Elected Officials".  When you enter your zip code, it will come up with your governor, senators, and congressmen.  When you click on them, you should be able to learn about them and the issues they support.  Most of them have their own websites you can go to, and you can e-mail them with your requests/questions.  You can also call them to let them know what you, as a constituent, would like for them to do.  Right now, there is a bill that is stuck in the Senate that could truly help everyone living with paralysis.  It passed unanimously through the House of Representatives.  It is called the Christopher and Dana Reeve Paralysis Act (H.R. 1727 in the House and S.1183 in the Senate).  This act outlines, and would help to put into place, all of the infrastructure it will take to GO FORWARD to find the cure.  We KNOW Erin will walk someday, but without this bill it is going to take so much longer.  If you do want to contact your Senator, please ask them to be a co-sponsor for the bill.  If you are from Oklahoma, you may have to work a bit harder, as that is where it is held up right now.  I didn't realize that any Senator could put a hold on a bill indefinitely, but that is what is happening.  Frustrating!!!  Anyway, please let your senators know that this bill has bipartisan support and that it passed unanimously through the House.  In the future, I will write about other ways that you can help this research move forward, but for now, I wanted to tell you the easiest way to do it.

Yesterday, the girls and I went to Washington D.C. to visit our congressmen and senators on Capitol Hill.  What an amazing experience!!  I have to say that I was pretty nervous, because I have never done anything like this before, but it was a great learning experience and very empowering.  We went to meet one of our congressmen, Representative Rob Wittman, and he was absolutely fantastic.  We were told ahead of time by a few people that we shouldn't expect to actually get to meet the congressmen and senators -- they usually send an aid; however, Congressman Wittman came in and invited us into his office.  He was very attentive and wanted to know all of our concerns.  Since he has already supported the CDRPA, we thanked him for that, and we asked him to please support any other legislation that comes before him concerning people with disabilities and spinal cord injuries.  He let us know that we could contact him any time and even gave us his personal cell phone number.  Wow, how is that for impressive!!!  He definitely has our vote for as long as he wants this office!  We want to sincerely thank him for taking the time to see us and for listening to an emotional mom who just wants the best for her little girls.  We also want to thank everyone in Rep. Wittman's office for treating us so well and for making sure we were all well taken care of.  What a great experience!  We then made our way over to the other side of the Capitol to where the Senate buildings are.  We met up with two other impressive women (Pam and Mary) for our next two appointments.  Along the way, we saw a few of the other people from the Working2Walk conference who were there to do the same thing we were.  I just felt like cheering when we saw them, and we could all recognize the determined look in each other's eyes.  Our meetings in Senator Warner's and Senator Webb's offices went well, although we didn't get to meet the Senators in person.  It is a very busy time in Washington.  It's nice to know that these people really are accessible.  I never realized that until yesterday.  I'm not sure if our visits will make a difference in the vote, but I do know that seeing Erin in her wheelchair does make an impact.  We'll just have to see.  Keep an eye out for news of the Christopher and Dana Reeve Paralysis Act.  It will be an absolutely momentous day if it passes both the House and the Senate!

The girls enjoyed our walk around Capitol Hill.  We went by the Library of Congress, and there is a beautiful fountain out in front.  The girls loved it, and I think we would have stayed there all day if they had the choice.  I did take their picture in front of it, which I will post with the hundreds of others still waiting to be uploaded!  I pointed out all of the other great places as we passed by, although the girls just don't understand the significance of them yet.  We walked by the Supreme Court, and I would have loved to get their picture in front of the steps, but we didn't have time.  All in all, it was a great day, which wrapped up our amazing experience with Working2Walk (until next year).

We went directly from downtown Washington D.C. to the girls' singing class last night, so I'm sure you can imagine how exhausted they were.  I don't quite know where they found the reserves to be so energetic in class, but it was fun to watch.  We are busy getting ready for their big performances coming up in May, which will be so exciting.  I will post some video on youtube after the big events.

If you would like, here are a few other websites you can check out:  Unite2FightParalysis  , Determined2Heal  , and CareCure .

Thank you for caring about our family.  For those of you who have the desire to help, thank you from the bottom of our hearts!!

I also wanted to mention that we were able to meet up with our special friend Judy Klein from Restorative Therapies while we were at Kennedy Krieger.  Judy, as well as RTI, has done so much for Erin.  They provided her with an FES bike that helps to strengthen her muscles and gives her a cardiovascular workout.  It is a fantastic piece of technology, and we are thankful to have it.  Anyway, Judy stopped by, and after playing with all of the girls, she gave us the new brochure for RTI.  It has the girls' pictures in it from our photo shoot in December.  The brochure is fantastic and the pictures are adorable.  You can actually see some of the pictures and video and learn about their FES bike on their website:  Restorative Therapies.

One of the best things about staying in Baltimore is being at the Ronald McDonald House.  I'm not sure what we would do if that house wasn't there, and I'm sure every family that stays there feels the same way.  The girls truly love to "live" there for two weeks, and they always make wonderful friends.  The staff is amazing, and they really take care of all of the families.  If your family, church group, school group, etc is ever looking for some volunteer work, please consider your local Ronald McDonald House (if you have one in your area).  There are many opportunities to help the thousands of people who stay there each year.  You could go in to serve dinner one evening or even breakfast, which is very much appreciated.  It is so nice to be able to come back from a long day at the hospital and not have to worry about what we are going to make for dinner.  You could also sign up to do activities after dinner or on weekends with the families (i.e. crafts, bingo, games, etc).  I know that if we ever have the opportunity to give back, we will definitely do it. 

Another fantastic thing that happened while we were in Baltimore is that our wonderful friends from Under Armour came to visit us.  They continue to make shirts for Erin that she can wear underneath her TLSO (brace on her torso).  She often overheats, and these shirts wick the moisture away.  We are absolutely blessed to know these people, and we want to thank Ed, Dennis and Ella for all that they continue to do for Erin. 

Erin and Jade had a great first day back at school today.  They were extremely excited to go; so much so that Erin couldn't fall asleep last night.  They couldn't wait to see their friends!  Erin also had P.T. in school, and her therapist and teacher were amazed at the muscle activity they felt in Erin's legs.  Go Erin!

Taylor and I had a great morning together.  We ran some errands and then did school work.  She is such a fantastic reader, and she now reads to me before bed!  She reads chapter books by herself, only needing help with a word once in awhile.  She loves to read to her sisters as well, and that is so much fun to watch.  We are so proud of her!

As usual, our week will be busy, but as soon as I have time I will add a few of the 400+ pictures I took while we were at Kennedy Krieger.  Have a great week!

I'll start out by talking about another "1st" for Erin, and then I will tell you about our two week stay in Baltimore.

Last night, as I was getting ready to vacuum the family room, Erin asked to be in her powerchair.  Ever since her sisters could walk, they loved to run from the vacuum, giggling and screaming like it was going to suck them up.  Erin has never been able to do that.  Even if she was commando crawling, she knew she could never really get away.  Last night was the very first time Erin was able to "run" from the vacuum, and she loved it.  She screamed her little high pitched scream and cruised around in circles.  She went in front of the vacuum and then she would scream and laugh as she sped away.  Kevin and I couldn't stop smiling as we watched Erin and Jade playing.  We're just so proud of Erin for finding her own way to do things.  It is one of those little things that brought tears to my eyes.

Oh, something else that was extremely adorable yesterday was when Jade and Erin were playing together in the porch.  Jade is our little singer, and she makes up songs all the time.  As they were playing, Jade was making up a song, and Erin was singing along!  I just stood there and listened, completely amazed that Erin almost seemed to know the words Jade was going to sing next.  I wanted to run and grab the camcorder, but I knew that as soon as they saw it, they would stop singing.  Their special bond surprises us sometimes, as we see how deeply connected they still are.

Well, we just returned Friday evening from another two week stay in Baltimore so Erin could receive intense physical and occupational therapy at the Kennedy Krieger Institute.  It was a fantastic stay, and Erin did extremely well.  Every time we are there, we see dramatic improvements, and we are so thankful that we found this amazing facility.  Miss Becca and Miss Kristin, our very favorite Occupational Therapists, worked with Erin, and she had a new physical therapist this time.  Miss Robin worked with Erin, and she did an absolutely outstanding job!!  She had Erin working very hard while still having fun.  Robin was able to get Erin to walk much farther in her RGO than she ever has before, while using her new crutches.  Yay!  She also put long leg braces on Erin, and she had her standing in front of a bench just holding on with her hands.  Wow!  Robin even had Erin "cruising" down the length of the bench and back (with a lot of help).  It was exciting to see Erin adjusting her hips to correct her alignment, because Erin's injury starts just underneath her arms.  That means she should not be able to adjust her hips or even be aware that her hips are not in the correct position.  She is definitely becoming more aware of her torso and lower extremities.  Erin did a lot of walking on the treadmill and a little biking on the FES bike, just to adjust the settings on the bike and her seating arrangement.  On Wednesdays, Miss Judith worked with Erin, and Erin loved her as well.  Wednesdays are cooking days for the kids with Miss Kristen, and they were very excited to participate.  The first week we made pizzas from scratch, and the second week we made mac and cheese and brownies.  Cooking is always an adventure with our girls, and it was no different at KKI!  Many people in the gym participate, and they all enjoy the final products.  We even delivered some mac and cheese to some of the executives, riding in a "secret" elevator.  What could be more fun?!  Well, it seems there was one thing that was equally as fun... playing "Dance, Dance Revolution" on the Wii.  They put the dance pad on a tilt table in front of Erin, and she stood in front of it in her long leg braces.  She used her hands to dance, with Taylor and Jade's help.  They all loved it!  And of course, Taylor convinced Miss Judith to play with her on two separate occasions, so they could dance with their feet.  Thank you Miss Judith, for taking time out to play with Taylor and provide some therapy for her as well.  As far as OT, that's where Erin (and her sisters) get to explore their creative side.  They often get to paint, draw, use stickers, etc.  Erin never even realizes that she is working!  She is now able to pull herself up onto benches and some lower chairs.  Her sitting balance has improved tremendously, and she is able to correct herself if she starts falling over.  She did so well that Miss Becca won't need to work with her on our next visit.  She will certainly be available if we have any concerns, and she will pop her head in to see how Erin is doing, but right now Erin seems to be right on target.  Thank you Miss Becca and Miss Kristen for working so hard with Erin and for getting her to this point!

Erin had an appointment with Dr. Sadowski, who is a physiatrist.  As she was examining Erin, she was asking Erin all of the questions.  I kind of laughed, because you just never know what kind of answer you're going to get from a 4 year old.  The doctor then told Erin to move certain parts of her body, including her legs.  I probably looked at her like she was a little bit crazy.  I know that Erin can stand once in awhile for very short periods of time, but I wasn't sure that Erin would be able to initiate her leg muscles in that way.  Much to my surprise, Dr. Sadowski said that she could feel contractions in Erin's muscles when she asked her to move them.  What??!!  Wow, way to go Erin!!!!  We couldn't get her to move her lower legs or feet, but the doctor said that if she has function higher up, then she should surely have function down lower.  We'll keep on working hard until she can move everything!!  It's going to be a very slow process, but we all believe that she will get there someday.

Unfortunately, we do believe that Erin may be experiencing some symptoms of Autonomic Dysreflexia lately.  We knew it was a possibility because of the level of her injury (T3-T7).  We always hoped that she would never experience it, but these past 2 weeks she has shown some signs of it.  We will just stay on top of it, and the school is already aware of the issues, so hopefully she will be just fine.  Everyone at KKI helped us to understand it better.  Thank goodness we were there when these symptoms began! 

We just want to send a HUGE thank you to everyone at the International Center for Spinal Cord Injury at KKI for working so hard with Erin (and Taylor) and for making therapy so much fun for all of our girls!  You are all absolutely the best people we have ever met.  Thank you!!!!  Also, thank you to some of the other patients for letting Taylor and Jade "help" with your therapy.  They truly enjoyed themselves and felt like they were doing something very useful.

O.k., I have to close for tonight, but tomorrow I will write about yet another beautiful experience we had at the Ronald McDonald House.  Thank you for stopping by our site.  It means so much to us!!!

Well, Titanic is still the prefered movie with the girls.  All of their dolls have now become either Jack or Rose, and they love to draw pictures of boats.  Hmmmmmm....  this is so funny!  Our girls are just so unpredictable!

We had another exciting little moment tonight.  Erin wanted to look out a window that Jade was looking out of.  It was at chin level for them, so I thought I would need to hold Erin up.  As soon as I put her up to the window, she grabbed on to the ledge and stood up.  I mean, she literally stood by herself for at least 10 seconds before her legs started to sag.  Even at that point she didn't want me to help her, so I just straightened her knees up again, and I gave her small corrections with her legs for a little while until I could see that she was truly getting tired.  It made my heart soar, and I just wanted to shout with excitement.  I know she has done this in the past, but during those times we did not know if the movements were voluntary or just reflex.  We now know that she can voluntarily activate some of the muscles in her legs, and it's so exciting to see her doing it!  Although Erin cannot crawl or walk yet, these are the moments that allow us to truly believe it will happen one day.  Kevin and I are so extremely proud of her for all of her hard work and dedication.  At the age of 4, Erin should be able to just play and not have a care in the world.  Instead, she has therapy everyday, whether at home or at a center, and she never complains.  K.J., Taylor, and Jade never complain either as they help with the therapy or when they have to sit in the car for hours on end going to and from P.T.  We are absolutely blessed to have these wonderful, amazing children!

Thank you for stopping by again!  We are so grateful to have you in our lives!  Have a fantastic week!!!

I FINALLY uploaded some new pictures.  Thank you for waiting so patiently!  :0)  We have had quite a busy week, and today was the very first time I've had a chance to sit down at the computer to do it.  Even though it was spring break for Erin and Jade, we truly didn't take much of a break.  We had tons of therapy, and Erin is doing extremely well.  And good news, after consulting with two amazing therapists at KKI (Miss Maribeth and Ms. Becca), we are able to get a contraction in Taylor's calf muscle.  Whew!  We were pretty worried for a little while there, but thankfully the muscle is finally responding.  Thank you, ladies!!! 

Here is an amusing story for you.  Two weeks ago, the girls were watching "Reading Rainbow", and it was talking about the ship Titanic.  Taylor began asking me about it, so I told her what happened to the ship.  I also told her that there was a movie about it, and I thought we could watch it sometime (not really thinking it would interest her too much yet).  Well, the movie was actually on T.V. that night, and so we watched it, but she didn't get to see the end.  All of the girls were enthralled with the movie, and they very willingly looked away during all of the love scenes.  It came on again the next day, so they finally got to see the entire movie.  I thought they would be scared during the part where the ship was sinking, but they just had a million questions instead.  "Titanic" has now become their favorite movie, and they ask to watch it all the time.  They keep talking about Jack and Rose and the mean guy, Cal.  I'm pretty sure this was the last movie we thought they would actually latch onto, and it will probably fade quickly, but it is kind of funny.  They have all decided that they never want to take a trip on the Titanic, even if it wasn't on the bottom of the ocean.  :0)

We hope you're having a great weekend!  Enjoy the pictures.

Take care!

Happy Easter Everyone!  We hope that you all have a wonderful day!  The girls were so excited when they woke up this morning.  We colored eggs yesterday, and we even put glitter on them.  Very messy, but they loved it.  So, this morning they couldn't wait for their Easter egg hunt.  We only dyed 12 eggs, so they could each find 4.  They took turns finding eggs, and they even helped each other out.  It was fun to watch them once again!  We really miss K.J. this year, as he is with his mom today.  We usually re-hide the eggs for him in MUCH harder spots, and he has his own egg hunt after the girls. 

We went to Erin and Jade's Spring Fling party at school on Thursday, and they all had such a fantastic time.  Taylor truly enjoyed being a part of the class (thank you Mrs. Amanda), and I'm sure it makes her even more excited to go to school this fall.  They did crafts, sang some great songs (sign language included), we had lunch, and then we went on an Easter egg hunt outside.  Too much excitement!  A little girl named Amber decided she would really like to help Erin get the eggs, so when we went outside, Amber ran around and picked up a ton of eggs while Erin held her basket.  It was so cute and very sweet of Amber to do that for Erin.  There are some really wonderful kids in that class!  The eggs were plastic and filled with either toys or candy.  As soon as we got home, the girls spilled the eggs out of their bags and methodically went through each one to see what surprise was waiting for them inside.  I took many pictures during that day, which just adds to the number of pictures I still need to post!  I'll get there soon.

Erin and Jade have spring break this week, so we'll all be together once again.  Yay!  We'll still be very busy, but I will be happy to have all of my girls with me. 

Oh, big news:  Erin wore big girl underwear all day yesterday!!!!!  She was soooooo excited!  We have everything down well enough that I knew she could do it, and she did.  It may not work out that nicely every day, but that doesn't matter.  She feels like such a big girl, and you could see how proud she was.  For now, we'll just stick to days at home to do that, but if we continue to have such good luck, we may try it everyday.  Good Job Erin!! 

Once again, we hope you have a very Happy Easter!  May your week be filled with love, and may spring bring nice weather!  :0)

Our Love,
The Buckles Family

I still haven't had time to post the pictures, but I will get to it when I can.  It's not quite as quick as just posting an update. 

Yet another busy week here.  Tuesdays are pretty crazy, because I have to drop Erin and Jade off for school, and then we pick them up early in order to go to physical therapy.  Erin has therapy first, and then Taylor has it right after.  When we get home from that, we have enough time to get a snack and get a few things done.  We are then off to singing group.  After that we come home to make dinner and get the kids to bed.  Phew! 

Erin and Taylor both had a fantastic day in physical therapy yesterday.  They worked extremely hard.  Erin worked the entire time without her TLSO (body brace) on.  She's doing great, working on balance and reaching for things up high and to the left and right.  Taylor tries so hard, and neither of them give up.  We are a bit concerned about Taylor's calf muscle.  Before her surgery, it was quite atrophied, but we were able to get a muscle contraction when working with electrical stimulation.  Now, however, we are unable to elicit a contraction at all.  I thought maybe it was just me, but two therapists worked on it yesterday, and they weren't able to get one either.  I will contact her therapist at Kennedy Krieger to see if she has any suggestions.  If we are unable to get any kind of contraction, there may be a very serious underlying issue.  It is possible that the nerves leading to that muscle were damaged severely by the tumor on her spinal cord or were stretched to the point of no longer being able to function.  If this is the case, her muscle will no longer be viable.  We have many questions that need to be answered fairly soon.  I hope there is something we can do for her.

The girls had a wonderful time at singing class again last night.  We convinced Erin to take her wheeled stander again, and it really is much better for dancing than her wheelchair.  Kevin, KJ, and my mom went along with us to watch the girls doing their singing warm-ups.  They are just so adorable!  All of the kids at class have fallen in love with Erin and Jade, and a group of girls actually rush over to be able to sit or stand by them.  Because she is their big sister, Taylor receives some attention too, which is so good for her. 

My parents are leaving tomorrow, sadly.  It has been so amazing to have them here, as they have been beyond helpful.  We truly appreciate everything they have done for us, and we love them dearly.  We will all be very sad to see them go.  Thank you both for EVERYTHING!

Erin and Jade have a spring party at school tomorrow, so I'm sure I'll have much to write about. 

Have a great evening!

Happy St. Patrick's Day!!  We hope you all had a wonderful day!  This morning as I was getting the girls ready for school, we were talking about being Irish.  I have Irish in my lineage, and Erin was excited to find out that her name was Irish.  Jade thought it was cool that her name sometimes refers to the color green, which is a big part of St. Patrick's Day and Irish tradition.  They were so cute!  When I picked them up from school, they couldn't stop talking about how the leprechauns snuck into their classroom while they were outside playing and left them all some gold coins.  So much excitement!  They played with their gold coins for quite a while after coming home.

We went outside this afternoon to enjoy the nice weather and beautiful sunshine.  We have been able to spend quite a bit of time outside this past week, which has been fantastic for all of us.  I have many great pictures to share -- hopefully I can put them up tomorrow.

Have an outstanding week!!

xoxoxoxoxoxo
The Buckles Family

Erin had a spectacular first day of school yesterday.  As we were putting her to bed on Wednesday night, she looked up at me and asked, "Mommy, what if I miss you tomorrow?"  My heart was melting as I told her that she was going to be having way too much fun to miss me.  So cute!  When the girls woke up, they were both excited about Erin going to school.  Kevin and I took them, and as we were getting out of the van, the OT, PT and their entire class came over to meet us.  By that time, both girls were acting much more stoic, and I think Erin was a bit nervous.  We went to their classroom with them to make sure Erin was o.k., and it was actually Jade who looked sad as we were leaving.  Erin was already involved in a conversation.  When we went back to pick them up in the afternoon, they both looked excited and happy as they came out of the door.  The teachers said Erin had a fantastic day, and Erin introduced me to her new friend, Madison.  Madison looked thrilled to be around Erin, and Erin was excited to have a friend.  She couldn't stop talking about her all afternoon.  When I talked to her teacher this morning, she said that Erin and Madison are already joined at the hip.  Yay!  Jade told us all about their day, and let us know that she helped Erin when she needed it.  What a great sister!!  Jade likes to play with a boy named Jaden in her class, and her daddy has already told her, "NO BOYFRIENDS!"  :0)

I added a video of the girls at their singing class.  They were doing their vocal warm-ups, and it was just so adorable.

Have a terrific weekend!  We're excited to have K.J. back with us, so we're going to enjoy our weekend with our family.

The girls were all so excited to wake up on Monday morning, because they couldn't wait to see their daddy.  He had been out of town with his unit, and he got home really late on Sunday night.  In fact, they knew that I was going to pick him up, and Erin just couldn't sleep.  She wanted to be waiting at the door, waving, when we pulled into the driveway.  She couldn't quite understand that it would be the middle of the night when we got home.  Poor thing!  The way they greeted him on Monday was like he had been gone for years!  They just adore their daddy!  Each day he gets home from work is like a big homecoming as well.  It's not a bad thing when you have four girls completely in love with you!

Last night, the girls had their singing group again.  Erin decided that she wanted to take her Dynamic Stander (wheeled stander) instead of her wheelchair.  She did FANTASTIC in it!  She did more of the dance moves, even the spins, and she seemed to feel far more confident in it.  In her wheelchair, Erin sometimes loses her balance while sitting.  There is no danger of falling out of the chair, but she does fall forward and has to push herself back up.  In the stander she didn't encounter that problem.  I think we may use this every week.  It was so much fun to watch her!  Of course, everyone else thought her stander was pretty cool as well. 

Last night all of the girls were playing around on the floor, and we challenged them to commando crawl like Erin across the floor.  First of all, they had a difficult time doing it, so eventually their little legs would kick in to help out.  You could see the realization hit them that this is what their sister does everyday, and she doesn't have the benefit of the help of her legs.  Erin challenged them to a race, and she blew them out of the water!  You could see that she was very proud of herself.  As for her sisters, they were both exhausted and were happy to get back up on their feet to run around again.  Kevin and I even had a commando crawl race, much to everyone's amusement. He won, of course!

We were thinking today would be Erin's first day of school.  Her pediatrician worked hard to get all of her required paperwork done, and he faxed it to us yesterday (Thank you Dr. Labow!), but we decided to hold off for one more day.  Erin and Jade's teacher is not in the classroom today, as she has an all-day meeting.  We did not want Erin's first day to be with a substitute, no matter how wonderful she may be.  Also, Kevin has the day off of work tomorrow, so we can all be there for the big day.  She is soooo excited!  Taylor won't know what to do with herself, being the only one home with me; however, it won't take her long to bask in the glory of one on one attention.  We will definitely get a lot more done for school!  I'm a little nervous about Erin going to school, but I know she will love it, and it will be good for her to interact with other children.

I just wanted to share something special with you.  Many of you know that we do our best to get in contact with other families who are expecting conjoined twins.  Sometimes we are contacted by friends or family members of these families to let us know that they would like someone to talk to.  Two years ago, we were contacted by a wonderful woman who's sister was expecting conjoined twins, and she brought our families together.  Mary Beth worked hard to make sure that her sister's family was taken care of.  Mary Beth was Suzy Fitterer's sister.  I say "was" because, very sadly, Mary Beth passed away before her nieces could be separated.  We didn't have the opportunity to meet Mary Beth in person, but we sent many e-mails back and forth, and because of her, we are now very good friends with Suzy, Stacy, Nick, Abby and Maddy Fitterer.  What a blessing she was in our lives!  Anyway, for Erin and Jade's birthday, Suzy sent all of our girls some t-shirts from one of their local universities.  Our girls wear these shirts in honor of Mary Beth!



We will update tomorrow to let you know about Erin's first day of school.  Have a wonderful Wednesday!

Erin and Jade had an outstanding day at school.  Erin was a bit disappointed that she wasn't able to go to school this morning with Jade, but as soon as I got home from dropping Jade off, Erin and I got ready to go.  She was so excited to meet her class and have her picture taken with them.  When we walked into the gym (where the pictures were being taken), Jade saw us and immediately smiled and had tears in her eyes.  She later told me that she was so excited to see me that her eyes got tears in them.  Oh, my sweet girl!  She just kept giving me big hugs and holding my hand, all the while with a giant smile on her face.  Erin just wanted to show everyone how independent she is.  She was so proud to wheel herself everywhere, and all of the other kids loved her wheelchair.  Everyone thinks her light-up wheels are super cool.  Anyway, class pictures went well.   It's always so funny to see people trying to get 3 and 4 year olds to all look at the camera and smile at the same time.  Seriously, we have a hard time just getting our three girls to do it!  After the class picture, each student had individual pictures taken, which was a great bonus.  We're excited about our first set of school pictures of the girls.  It may sound silly to some, but we just never knew if we would get to this point.  After pictures were taken, Mrs. Amanda (the girls' teacher), Erin and I made a trip to visit the school nurse to talk about any health issues that may arise.  It was a great meeting, and I feel comfortable sending them to this school where everyone cares so much about them.  Mrs. Amanda invited Erin to join the class for the remainder of the day, so we went back to the classroom.  Erin had the opportunity to see what school will be like, and the teachers were able to ask me questions about how to help her.  We even went to lunch with everyone, and Jade shared her lunch with Erin.  All in all, it was a wonderful experience for Erin, and she can't wait to start going to school full-time. 

Each day brings something new with our children.  They are opposites in so many ways, each and every one of them.  Jade and Erin make us laugh, because, while they are identical twins, they have many differences.  Like mirror image twins, they have opposite dominant hands.  Erin is right-handed and Jade is left.  Today we saw another difference.  Jade likes to take her lunch every day, enjoying peanut butter and jelly sandwiches and little surprises I put in her lunch bag.  Erin informed us today that she would like to buy her lunch.  O.k., that will be interesting!  I've already warned her teachers that they will need to keep reminding Erin to eat.  Mealtimes at our house usually last more than an hour (because of Erin), and as most of you know, school lunches are much shorter than that.  We'll see what happens!  :0)

Oh, some of you may be wondering who the other boy is in the pictures of the birthday party.  That is our nephew Derek.  He is a freshman in college, and the girls adore him.  They were excited to have three of their cousins here, as well as their aunt and uncle (Kevin's sister and her husband).  I didn't list everyone who came to the party, but we just want you all to know how thankful we are that you came!  Also, as you could easily see, Taylor, Erin and Jade absolutely LOVE K.J.  I was glad that I had my camera out when he got to the party, because the pictures speak for themselves.  He's such a great big brother!

We hope you all have a wonderful weekend.  Please stay safe!

Today was a great day for us.  After taking Jade to school this morning, Taylor suggested that she would like to do something alone with me.  She had that sparkle in her eye that let me know she had a special outing in mind.  With a smile on my face, I asked her what she would like to do.  She said, "well, it's been a while since we've been swimming..."   She knew she had me, as she knows I love the pool, and with my parents here, we had the opportunity to have some Mommy/Taylor time.  I promised Erin that we would all go to the pool tomorrow, and then Taylor and I packed our things for a fun hour in the pool.  She is becoming a great little swimmer, and she's a fantastic listener when I'm explaining how to do something.  We had a wonderful time!

We left the pool and went straight to Jade's school to pick her up.  She and Erin are so excited that Erin will be joining the class tomorrow for pictures!  Too cute!

Grandpa took Taylor to the pet store after lunch, and he bought her some new fish.  She has a cute little tank, and each year my parents come to visit, my dad takes her to buy more fish.  She loves her special time with Grandpa, and everyone gets to enjoy the beautiful fish.

When they returned from the pet store, the girls and I decided to do some baking.  We made my specialty:  chocolate chip cookies.  The girls really love to pour in the ingredients, but their favorite part is sneaking a little bit of cookie dough before we bake them.  Of course, once the baking actually started, the girls abandoned me in order to go outside with Grandma and Grandpa to blow bubbles and swing.  They had such a great time!

Oh, Erin had another adorable comment tonight.  I was catheterizing her, and one of the issues we always have with her is that she doesn't drink enough during the day.  We always know when we cath her if she has or not.  After cathing her a few minutes ago I told her that she didn't drink enough again, and Erin said, "Oh SNAP!  Rats!"  After laughing for a little while, I asked her where she heard that before, and she said, of course, "T.V." 

Tomorrow should be another fun day.  We hope you all have a fantastic Friday!

P.S.  I'll do my best to get the pictures up tonight or tomorrow sometime.  Sorry!

We've had so much going on this past week, but I apologize for not updating sooner. 

On Friday I took Erin and Jade in for their 4 year well-child check-ups.  They are both doing very well and have been growing.  Jade now weighs 30.36 lbs and she is 37.6 inches tall.  She is actually now in the 12th-15th percentile on the growth chart.  Wow!  Go Jade!  Erin weighs 24.97 lbs and she is 35.8 inches tall.  This is such a relief, as she was kind of stuck between 21-23 lbs for the past year.  Yay!  She is now in the 10th-12th percentile on the growth chart.  For so long they weren't on the growth chart at all, so we're extremely pleased with these numbers. 

On Saturday we had a small birthday party for our big girls.  We are so thankful to everyone who came, because they are all very special to us, and most of them had to drive quite far to get here.  What a blessing you all are in our lives!  Jade and Erin had a fabulous time, and they really enjoyed their Hannah Montana cake and the wonderful gifts they were given!  I'll be sure to post many pictures of our day.

The weather has been absolutely beautiful here over the past few days.  We have spent a great deal of time outside, going to the playground both Sunday and Monday afternoons.  Erin was able to take her powerchair, and she loved it!  You could see that she felt so much freedom in being able to drive herself there, without having to rely on anyone else to help her.  She can go over grass and mulch with ease, so being on the playground is no problem.  Now all we have to figure out is an easier way to play on the equipment without getting stepped on or kicked by other kids.  She did have a very sad moment when the other kids were playing tag.  They were all down on the ground underneath the equipment when a little boy decided to chase them.  Erin had been playing out of her chair when the kids started running.  She immediately started crying, and she couldn't even tell me what was wrong because she was crying so hard.  I had been watching her, so I knew that she wasn't hurt, and I knew in my heart what the problem was.  Later, once we were home, Erin told me that she had cried because she couldn't get away from the boy.  I imagine she felt very helpless and disappointed.  So, on Monday when another group of kids was playing tag, I was her legs.  Erin and I ran until I couldn't run anymore.  She had a great time!  Our big worry now is that, once she goes to elementary school, we will not be able to do that for her.  We won't be there at recess everyday when her friends are running and climbing and changing location every few seconds.  We have a lot to think about and plan for in the next year.  Anyway, on our way back from the playground on Monday, the girls were drinking some juice boxes that a little boy had given them.  I asked Erin if she wanted hers, but she said she would drink it when she got home.  She said, "I don't want to drink and drive."  How cute is that?!

Last night, at the end of their music class, Taylor was able to sing a solo to the group.  She was so excited, and we had been practicing for days.  She wasn't even nervous (I would have been a wreck)!  She did an outstanding job, and we are so very proud of her!  On her critique, Taylor received all of the highest marks and very positive comments from the instructors.  The class clapped and cheered when she was done, and I could see her beaming with pride.  Way to go Taylor!  We love you!

We had Erin's IEP meeting yesterday, and it went very well.  She is eligible to start preschool next Wednesday if I am able to get all of the paperwork completed by then.  We have many medical forms that need to be filled out and signed by her pediatrician, and he is extremely busy, so we'll keep our fingers crossed.  Jade is finally excited to have Erin joining her class, and Erin just can't wait.  She gets to join her new class on Friday for class pictures (Thank you Mrs. Amanda!).  Jade is already talking about how she will help Erin when they are at school.  Our precious girls!

Well, I am off to help Taylor with some school work  (Slime Science) and get some laundry done.  Have a great day!

xoxoxoxoxoxox
The Buckles Family

First, we would like to wish our niece, Jordan, a very happy birthday today!  We hope you have a fabulous day!!

I posted an update last night about the girls' birthday.  Please see below for details.  I just posted new pictures from Jade's last soccer practice as well as from our day yesterday.  You will see Erin dressed like Dorothy from the Wizard of Oz.  That was part of her therapy, and she was excited to get dressed up; however, the unhappy look is because she was ready to move on, and mommy wanted to take some pictures.  Also, Jade was pretending she was Tarzan.  Adorable girls!  The picture of Taylor standing on her right foot getting ready to kick the ball is fantastic, because she usually has no balance on that foot.  With her brace on she can balance for about 3 seconds, but holding onto the rope she did a little better.  Almost every muscle group in Taylor's right leg is severely atrophied, so we're working very hard to build those back up if possible.  Way to go, Taylor Bear!

We hope the rest of your week is wonderful!  Thank you for taking the time to stop in!

We would like to thank everyone who stopped in to say happy birthday to Jade and Erin.  We also want to thank those of you who sent e-mails as well.  Your kindness and caring are astounding!  We feel so blessed to have you all "in our lives". 

The girls had a wonderful day!  It was crazy busy, but they absolutely loved when people stopped to say happy birthday.  Jade had a little party at school, and she was able to hand out the treats that she brought.  When we picked her up, she came walking into the office with a big birthday crown on her head.  You should have seen the look of pride on her face!!  After that we were off to physical therapy.  Erin and Taylor both had appointments today, and they did a fantastic job!  Chrissy, their therapist, worked with Erin first, and she had her climb up onto a bench to sit.  She then told Erin to hold onto her arms and stand up.  My initial thought was, "ummmm, we're not quite there yet", but Erin just followed directions.  She reached out, held onto Chrissy's arms, and she stood up.  Now, of course she had a great deal of help, BUT she did use her leg muscles to help push into a standing position.  Chrissy thinks Erin is able to support about 25% of her weight.  WOW!  Even though it was the girls' birthday, that was the best gift we could have gotten from her!!!  She has been bearing a little bit of weight for a while now (randomly), but it was great to kind of have an idea just how much.  Again, it was a guess on her part, but the best part was that a P.T. was able to experience Erin doing it on command.  They still cannot tell us if it is voluntary movement, but we think it's a great sign.  Taylor also did a great job during her therapy.  She has had a great deal of muscle atrophy in her right glute, hamstring, calf, and foot.  These are all things we really need to work on, and Chrissy gave us some great exercises.  Taylor takes therapy very seriously (as she does most things), and she worked as hard as she could.  She knows that it is going to help her, and she has that same determination that drives Erin.  Way to go Taylor!

After therapy, we rushed home to make cupcakes.  This is always a very exciting event, as all the girls love to help.  They take turns putting things into the batter and stirring.  While it takes at least twice as long, it is so worth it to see their smiles as we bake together.  Even before the cupcakes were out of the oven, we had to run off to the girls' singing group.  This time one of the instructors sat down next to Erin on the floor and helped her to figure out arm movements for the warm-ups.  Erin clearly enjoyed this, and she did much better this time around.  Then they brought Erin and Jade to the front of the room so everyone could sing "Happy Birthday" to them.  It was so much fun to watch!  The very best part of the evening, hands down, was when Taylor was chosen to do the spotlight solo for next week.  Each week two students are chosen to do a solo at the end of class the following week.  Taylor so badly wanted to be chosen, and tonight she was!! Yeah!!  We will have to practice. 

Thank you again for all of the birthday wishes.  I will post new pictures tomorrow.  Have a great night!

Kevin and I would like to wish our dear, sweet, beautiful little girls a very happy 4th birthday!  These little miracles have affected every part of our lives in the best ways possible.  We continue to learn from them each day about the Joy of life, not taking a single moment for granted, and loving fully and completely.  They teach us about true courage and determination, and we have learned that we should never give up, because the results can be absolutely amazing!  Thank you, Erin and Jade, for giving us these gifts!

As I began writing today, I almost wrote February 26, 2004.  There are days that their birth and separation seem like so long ago, but today, on their birthday, we are taken back to that time.  We are taken back to that one miraculous moment when our beautiful babies were brought into our lives, and the whole world stopped as we waited to hear their cries.  We were not guaranteed any time with them.  No one knew if they would be able to breath on their own, and here we are four years later celebrating their lives.  They have truly beaten all of the odds, and we know that Erin will continue to do just that in her quest to walk.  We want to once again take a moment to thank everyone who has played a part in getting them to this point.  We owe you a debt of gratitude that we will never be able to repay!

We also want to take a moment to wish Maliyah and Kendra Herrin a very Happy Birthday.  These girls, who are turning 6 today, are also formerly conjoined twins.  What an amazing coincidence that our girls share a birthday.  An absolutely special day indeed!  You can check up on them on their website:  www.herrintwins.com  

We have a very busy day today.  Jade was so excited to take treats to school to share with her classmates.  We are also going to therapy and then their singing group.  Should be a fun-filled day! 

Once again, Happy Birthday Erin and Jade!!!!  We love you both with all of our hearts!

 

We had a great weekend, just doing some things around the house.  We did not get any snow on Friday, but school was canceled because we did get rain that caused a lot of ice on the roads.  We were all disappointed, as we were looking forward to playing in the snow again.  Oh well, we'll still keep hoping for more.

Jade had her last soccer practice today.  She was pretty sad, because she truly loved it, but once it gets nice outside we'll go to the park so she can play.  I have to say that we absolutely loved her coach, and he did a fantastic job with the kids.  He taught them many skills while making it tons of fun for them.  Today he had his players ask their parents and siblings to come out on the field to play with them.  Taylor ran out right away, and Erin gave me the look that said, "Mommy, I really want to play."  I grabbed her out of her chair, and we ran out to the field.  For the first game I held her, but then she wanted to get into her chair to play.  The coach said it would be fine, and Erin was determined to push herself across the field.  The game was "Cops and Robbers" where the robbers had to run across while the cops had to kick balls at them.  Erin wanted to be a robber, and she pushed herself for the first time across.  After that, she asked me to push her, because it was pretty hard.  Well, Erin ended up winning!!  Yay Erin!  After that, just the soccer kids played a game of soccer with one of those giant exercise balls, and Jade scored two goals!  Way to go Jade!!  She was sooo cute!  The last game to be played was called "Foxes and Farmers".  The foxes put little mesh jerseys in the back of their pants for their tails, and the farmers chase them to try to get their tails (like flag football).  The parents and siblings were once again invited onto the field to play.  We all went out there again, and Erin and I were farmers.  We chased Taylor and Jade all around the field trying to get their tails.  Erin wanted to be the one to grab the tails, so I was running with her held out in front of me.  Oh, did I mention that I had to bend over while running (while holding her out in front of me) so she could reach their tails?!  Wow, that was a workout!  Did I also mention that I was wearing high heeled boots today?  We all laughed so hard and had such a great time.  During the next game, Erin wanted to be a fox.  I was trying to figure out how to do that since the parents (farmers) were chasing their own kids (foxes).  The coach piped up and said that he would give Erin a piggyback ride so she could be a fox.  You should have seen the look on her face!  She was the most excited girl in the whole world!  I had tears in my eyes as I watched her, because she was just so excited to be able to play with everyone else.  She was a part of the team!  He ran with her while I chased all three of the girls.  After everyone was caught, we sat in the center of the field so the kids could get stamps on their hands.  Erin couldn't believe she got to be a part of that as well.  Then we all got into a huddle, put our hands in, and we yelled, "GO TEAM!"  All of our girls were excited, but Erin just couldn't stop smiling.   I thanked the coach profusely, unable to put into words just how much it meant to us that he was able to find a way to include Erin.  He will probably never know what a big difference he made today.  Thanks coach J.D.!!  Erin can't stop talking about the fact that she got a piggyback ride from the COACH!  Sweet girl!  Taylor also did a great job today running, and I think she only fell down once.  We were so impressed and proud of her.  She wasn't even wearing her brace, because she just had it modified, and we have to slowly get back into it.  Way to go Taylor!!  I know she would love to play soccer, too. 

I cannot believe that tomorrow is Erin and Jade's birthday!  Wow, it's amazing that four years ago these precious little angels came into our lives.  So much has happened, and through it all we know without a doubt that we have been blessed beyond measure!  We are just so thankful!

I have pictures to add, hopefully sometime tonight, so make sure you check back later.

Oh, we also wanted to tell you about another wonderful family we've been in contact with that could really use your prayers.  The Bailey family has conjoined daughters Emma and Taylor, and they are undergoing testing to see if they are good candidates for separation.  You can check up on this family on their website:  http://emmaandtaylorbailey.blogspot.com/

We want to wish them all the best.  It takes so much courage to be on that journey, and they need all of the support and encouragement they can get.

We would like to start out by thanking the many, many kind people who left messages of encouragement and support on our website and for those who sent us e-mails as well.  We cannot even begin to express how thankful we are to have so many wonderful people out there who care about our family!  Thank you from the bottom of our hearts!

We would also like to reassure all of you that we will continue to post updates on our website.  It has grown exponentially from when we started it in 2005, and we know that many people check on our family daily.  It would probably be much easier for us to maintain a Caringbridge site, but we could only post 9 pictures at a time, and we're not about to move now after putting so much into this site.  So, please don't worry, you will be able to read about the Buckles family for a long time to come.  If we took our site down, that would mean all of the negative people have won.  We don't give in that easily!!

Yesterday we had to take the girls to our orthotist again.  Taylor was having some issues with her brace (for her foot), and it seems that she has grown quite a bit since getting it in August.  Erin also had some adjustments made to her RGO.  Of course, since her new Loftstrand crutches were just delivered, I decided it would be a GREAT idea to take those to the appointment instead of her walker; however, Erin hasn't used crutches since we were at KKI in December, and she was quite frightened by the prospect.  All she needed to do was take a few steps so they could make sure the adjustments were correct, but she didn't want to move at all.  It took a great deal of patience, time, and much convincing for her to take about 3 steps.  Thank you to Cidny and Mark for being so patient and for probably missing their lunch.  Our short appointments lately keep getting dragged out hours longer than they should be!  Oh well, everything turned out well.

It snowed for a little while last night right before dinner.  As soon as the first flakes started falling, Jade was ready to get her gear on to go outside.  She was so upset with me, because I told her we had to wait until some actually accumulated on the ground!  Goofy girl!  We never did get enough to do anything, but we are supposed to get more snow tonight, so hopefully we will be out playing in the white stuff tomorrow.  I'll let you know.  If it does snow, I hope school is cancelled so Jade has the opportunity to go sledding.  It may be melted by the time school is out.  We'll see.

Have a good night.  Keep your fingers crossed for lots of snow!

First of all, I would like to apologize to everyone who reads our site and truly concerned about our family.  Now most of you know that I usually stay out of this entire website thing.  Melissa maintains it and updates the blog and pictures.  I personally don't like it because of people like, "So Sweet" and "Sad".  When we started down this path with our girls, I was against putting even a small portion of our lives on the Internet for this very reason.  After the death threats and the FBI and local police getting involved, that was enough for me.  What really gets under my skin is that they aren't bold enough or have the guts enough to email us and discuss their concerns directly.  They hide behind those false names and fire pot shots at our family.  I won't even address the foolishness behind the statements that were made, because this will be the last time we EVER address this situation.  But "So Sweet" from Manassas, VA, "Sad" from the NY, NJ area and "Truth" from Yuma, AZ, yes, we know where you're from.  If you hate Melissa and myself so bad, that's fine, we're grown and can handle it, but when you bring our children into it, then in my opinion, you've crossed the line. 

We can see that you've been all over the website checking out the pictures, reading the updates and know you've been to the "Contact Us" page.  But just in case you missed it, here is our email address again; it's bucklestwins@aol.com.  We can even tell you how long you stayed logged in.  I know that there are racists out there that don't like the fact that she's white and I'm black.  I know that there are people who are against the war and don't like the fact that I'm in the Marine Corps.  Whatever your issue is, it really doesn't matter to me.  The crazy part about all of this is being in the Military, countless thousands of service men and women have given their lives so you can post the hateful and ignorant things you do.  Some of you even use your work computer to troll through the site.  That’s probably not such a good idea, because they are on a network and it would take them about 30 seconds to pinpoint which computer it came from, just a little advice for you.

I’d like to thank all of you who log on and give words of encouragement and hope.  SarahStJ, Debbie, Marilyn, Maggie in FL, Tanya, and countless of others who stop by and check-in on us, we really appreciate it.  In the future, if we keep the website up, we will not respond to anymore posts that question the things we do or the manner in which we raise our children.  We will simply delete them as soon as possible and move on with our day.   

For those of you who may be interested in my family, here you go.  My mother and older sister both came up for Erin and Jade’s separation surgery, my other sister couldn’t, but we were in contact with her during the entire evolution.  I told my mother that we were going to need her and she packed up everything and moved to Virginia for about 4 months to help out with the kids and the house.  The next year, she was actually up visiting when Hurricane Katrina hit.  My oldest sister made it out and my other sister went to Houston with her family and eventually drove up to Virginia and everyone lived with us.  My mother is now in Mississippi, we would love to have her up here close to all of her grandchildren here in Virginia (wink, wink), my oldest sister is in Texas and my other sister lives about 5 minutes from our home.  My nephews lost everything in the storm, but ALL three of them are straight “A” students and continue to defy the odds.

Kevin is not, the typical teenager, he loves his sisters and is always there to help out with them.  If that means, reading them a story at night, building castles with them, helping turn a jump rope for Taylor to help with her therapy or helping to stabilize Erin on the treadmill so Melissa and I can walk her legs for 30-45 minutes.  How many teenagers you know would do that without complaining?  I couldn’t ask for a better son.  Please keep in mind as you read our posts, how long would it take Erin to ask the questions that she does and for Jade to say the things that she says?  It’s only a few minutes out of a day, there’s so much more that doesn’t get written. 

Anyway, thank you for allowing me to say my piece and I realize that Melissa is far more eloquent when it comes to expressing what goes on around here, but I’m thankful for two things, not coming down to their level, and for spell check. 

Yay!  Erin was found to be eligible for services within our county.  It has been a long process (not over yet) but I know it will be worth it.  We still have her IEP meeting in a couple of weeks, after which time she will be allowed to go to preschool (Jade's preschool).  We had a great meeting today, and it was wonderful to receive all of her test scores and comments from the evaluators.  I know that Erin will get all of the assistance she needs within our schools.  Thank you to everyone involved!

Jade had another great day at school.  Sometimes she likes to talk in the car when I pick her up, but today she said, "Mommy, I will tell you about what I did today when we get home.  I want to listen to the music."    O.k.   Is she 3 or 13, I can't tell?! 

The girls had their singing group tonight.  They have so much fun and absolutely love it!  The parents aren't allowed to stay in the room anymore, but they let me stick around just in case Erin needs help with anything.  It's still difficult for me to watch as the kids are learning new dance steps that Erin cannot do.  Often she will just sit and watch them with a sad look on her face.  She actually made a comment to me tonight after we got home.  She said, "I can't do the things the other kids do.  I wish I could do those things."  Inside I was sobbing, but on the outside I tried to keep a smile on my face and just told her to figure out a way to move in her chair that is like what the other kids are doing.  I know it's not the same, and Erin knows it's not the same.  The kids don't talk to her and seem a little afraid to stand next to her chair.  It breaks my heart to watch this happening, but I know that she needs to find her own way.  I'm absolutely thankful that she is getting a service dog, because it will truly help to take the attention off of her chair.  Erin is such a sweet, likeable little girl, and I know if given a chance, she will make many friends.  Jade doesn't stand by her.  I'm not sure if that is by design or just by accident, but I have noticed that she really appreciates her independence from her twin sometimes; however, when they are away from each other, they still constantly ask where the other is.  Taylor is consistantly one of the most enthusiastic girls out there, and I love to watch her excitement shine through as she sings and dances. 

Oh, Taylor has some big news!  She has her first loose tooth!  We discovered it on Sunday evening at dinner.  She kept telling me that her tooth hurt, and when I went to feel it, it was just as I had suspected...  it was loose!  She couldn't contain herself.  It was like she won the lottery!   Just adorable!  I can't wait until it actually falls out.  Too much fun!

Enjoy your week!

We had a great weekend.  For the most part we hung out at home, playing, cleaning, and talking about Erin and Jade's upcoming birthday.  Wow, seriously, it's difficult to believe that they are going to be 4 years old!  We talked about what kind of party they want, and I think we narrowed it down to either a Hannah Montana party or a High School Musical theme.  Hmmmmmm.....  what happened to Dora or Care Bears?!  They definitely want chocolate cake, so as long as they get that, the rest won't really matter! 

On Sunday we went to the church that may help us out with our house.  It was a wonderful service, and we really enjoyed meeting everyone.  Thank you, Terri and Madi, for everything! 

Today we were able to sleep in because Jade didn't have school.  She did have soccer this afternoon, so we piled everyone into the van to go watch our soccer star.  It was pouring down rain, and everyone was driving like it had never rained here before.  Oh well, we finally made it and Jade ran off to do her thing.  Oh, big news:  she scored a goal today!!!!  Go Jadie!!  She looked over at us with the cutest look EVER, and we cheered our hearts out!  Too much fun!

Jade had another great comment again tonight.  She said, "You're a good Mama!  I want to keep you."   What a relief!  And Erin, she is full of questions.  I don't think I've ever gotten so many questions from anyone, even when I was teaching (from all of my students combined).  She will start a line of questioning and keep asking for more and more details until I have nothing left.  I better start researching these things!!

We have a busy week again, but that's pretty much the norm.  Thanks for all of the comments in the guestbook!  We love to hear from you and appreciate all of the kind things people have to say.

Lots of love!

Hello Everyone!  I just have some amusing comments to tell you about.  Our girls are constantly amusing us with the things they say, even though they are usually quite serious as they say them.

Here are two conversations I had with Taylor last week:

1.  We were talking about the moon landing, and I said, "Just think Taylor, you could be the first girl on the moon".
     Taylor replied, "Yeah, there have only been guys on the moon.  What ever happened to 'Ladies First'?"

2.  On Surfing:
     Taylor:  "I would LOVE to go surfing!"
     Me:  "I know, I've always wanted to learn how to do that."
     Taylor:  "I think I could teach you!"


Both Erin and Jade come up with great ones every day, but I never seem to remember them when I sit down at the computer.  I actually wrote Taylor's conversations down so I could relay them to you.  However, Jade has said a few things in the past two days that have brought smiles.  Yesterday, after we got done watching "Finding Nemo" on ice, we walked out of the suite and Jade said, "That was a good movie!"

On the way home from school today, we were talking about Jade and Erin being in the same class soon (hopefully).  Jade immediately piped in that she was older than Erin. When I told her that she and Erin were the exact same age, she insisted that she was, in fact, older.  Going along with her, I asked her if she was just a little older than Erin or a lot older, and Jade replied that she was a LOT older.  Well, I didn't want to burst her bubble, so I didn't pursue the conversation, but I think she will be very sad someday when she realizes that she was born at EXACTLY the same time as Erin. 

We hope you all have a wonderful weekend!

Happy Valentine's Day!!  We hope your day, and everyday, is filled with love and laughter.  Please take some time today to tell your family and friends just how much you love them.  We can't even begin to tell you how much it means to us that so many of you have signed our guestbook in the past few days with words of encouragement and kindness!  Thank you from the bottom of our hearts!

I want to thank Kevin for the beautiful gift from Edible Arrangements!  Honey, your card made me cry -- you truly are my Forever Valentine!  We have all enjoyed the fruit, especially Erin; she loves the strawberries!  Happy Valentine's Day, Sweetheart!

Erin and I drove into D.C. yesterday to go to Children's Hospital.  She needed some bloodwork done to test her calcium and vitamin D levels.  We're trying to see how we can help her to increase her bone density without the use of medication.  Erin didn't even cry when they put the needle into her arm.  She refused to look away and watched the entire time as her blood was drawn.  Way to go Erin!  We're so proud of you!  We want to thank Grandma Terry for providing Erin with a special treat for being such a big girl.  You are too good to us!  While we were at the hospital, we picked up some tickets from the Volunteer Services office for something special.  Thank you again to Katie, Grandma Terry, and everyone else for thinking of us! 

The tickets we picked up were for Disney on Ice.  The show was today (what a special Valentine's day treat) at 10:30.  We left at a little before 9 a.m. to drop off Jade's treat and Valentine's cards at her school.  Because of an accident on the interstate and the cab drivers' strike in D.C., we didn't make it to the Verizon Center until 11:30.  We got there with about 2 minutes left in the first half of the show.  The girls were all so excited, though, and just seeing their faces made the drive worthwhile.  It's not often that we are able to do special things like that, and just to see the look in their eyes as they watched "Finding Nemo"on ice brought tears to my eyes.  We were able to sit in a suite, which was so amazing!  Wow, Erin was able to wheel around, and it had a bathroom so I could catheterize the girls.  It was so much fun, and we truly want to thank the people who donated the tickets to Children's Hospital!  Thank you, Thank you!

Once again, we hope you all have a wonderful day.  We are sending hugs and kisses your way!!

Well, I think it's unfortunate that someone has chosen to post a negative comment on our guestbook again.  It seems to be happening quite often lately, especially on our friends' caringbridge sites.  Everyone is entitled to their own opinion, but until you have walked even one step in our shoes, please try to refrain from judging us.  What we write on our website doesn't even begin to scratch the surface of what truly goes on in our daily lives.  There are many things that we keep private, for safety reasons.  Not that I owe anyone an explanation, but if someone does not get mentioned it's because there is not much going on with that person, or they would prefer that I not share it on our website.  We don't have the opportunity to see Kevin's family very often, but please know that I love them dearly.  Remember, KJ is 15 and a sophomore in high school; being mentioned daily on our website is not high on his list of favorite things.  We are so very proud of him and wish we could see him more often.  He dislikes having his picture taken, which is why he is not in more pictures.  I'm saddened that someone thinks I am selfish, but I cannot control people's opinions. 

With that being said, let us move on to better subjects.  Everyone here is doing well.  Jade had soccer yesterday, and she was so excited that Grandma was able to go along to watch her play.  She is still very funny when she is out there, but the important thing is that she absolutely loves it!  She had to miss school this morning, because Erin had an appointment at a new therapy center.  Jade stayed here and hung out with Grandma and Grandpa while Taylor, Erin and I went to check out the new place.  After returning home, I went off to cast my vote in the Virginia Primary.  It's such an important thing to do, and I hope that everyone who still has the opportunity will go out and vote. 

The girls had their singing class tonight.  For those of you who are from Yuma, just think Choralairs.  It's so much fun to watch all of the girls singing and dancing.  They don't even stand together, which is kind of a surprise, but it's good.  Taylor is so enthusiastic about being there, and she really wants to make friends.  Unfortunately, the girls are already clicky at her age.  There is this little group that sticks together and shuns "outsiders";  of course, that is the group that Taylor is trying to befriend.  As a parent, it is so difficult to watch as other children don't treat your child like they should be treated.  I'm trying to encourage her to just be a leader and enjoy the class.

We're in the middle of an ice storm.  Hopefully the weather will improve, or I'm sure Jade won't have school tomorrow.  There is ice everywhere, and it is still raining/sleeting right now.  Yuck!  I wish it was snow! 

Anyway, I'll update again soon. 

Just a quick update to answer a question some of you may have.  The preschool that Jade is attending is one that utilizes something called "Reverse Mainstreaming".  The class has a mix of children who have disabilities and those who do not.  Jade is considered to be a peer model.  We didn't think she would be able to start preschool until next year, but a child moved away, and there was an opening for another peer model in the class.  Erin  has to go through an eligibility process to make sure she qualifies for  services within the county.  Unfortunately, nothing is quick or easy when it comes to receiving services for those with disabilities.  We have her Eligibility meeting on February 19th.  If she qualifies, we will then have an IEP meeting, after which time she will be able to begin preschool.  She and Jade will then be in the same class.  We think it will be a wonderful experience for both of them, and we can't wait until Erin can start (if she is found eligible).

I wanted to thank Lauren for the idea of having a penny drive.  I think it would be the perfect fundraiser for an elementary school setting.  Any more ideas would be greatly appreciated!  We have a lot of money to raise!

Happy Monday!

We had the most AMAZING weekend!!!  On Friday we drove up to West Virginia to spend the weekend with the Meek family and meet the service dogs and their trainers.  The girls did a fantastic job during the long car ride, although I'm sure we've probably been in the car just as long driving to or from D.C. some days!  After arriving, we took a minute to check into the hotel and then we went out to the Meek's house for a wonderful dinner.  Now, for those of you who have never been to West Virginia, it is very mountainous.  I don't think there is a piece of flat ground anywhere!  Anyway, Kim Meek had told me that she would leave her garage empty so we could pull into it when we got there.  I laughingly told her that she didn't have to do that -- we could just park on the street and walk up.  Knowing what we were about to encounter, she left the garage open for us anyway.  Well, when we pulled up in front of their house, I definitely changed my mind!  They have the STEEPEST driveway I've ever seen!  Thank you, Kim, for coming to our rescue!  After laughing at myself, we got everyone into the house and proceeded to have the best evening!  We enjoyed the company of the Meek family as well as Kyria and Heidi from the Paws4People organization.  Erin, Jade and Taylor had a great time playing with Olivia, Tara, Grace and Marissa (and Kyria and Heidi), as well as their dog Buddy.  They played board games, hide and seek, and danced to Hannah Montana music.  Could it get any better?!  Kim served a wonderful dinner of lasagna and manicotti and many desserts, and we all had great conversation.  Sometimes it's such a relief to be able to talk to other families who have gone through similar situations with their children.  Thank you Kim and Bill for everything!

On Saturday we went up to the Women's prison to meet the service dogs and their trainers.  What an absolutely wonderful experience!  We had the opportunity to meet more of the team that works with the dogs, and a group came up from North Carolina to spend the day as well.  The warden came down to meet us, and he told us more about the Federal prison that he runs.  We all probably have preconceived notions in our minds of what a prison is like, but what we experienced was not even close.  The facilities are new and state of the art.  They have many wonderful programs for the people there to better themselves and create a future for when they are released.  I was very impressed with what I saw and heard.  The girls couldn't wait to meet the dogs, and I was thrilled to have the chance to meet these women who put so much of themselves into training the dogs that will make such a huge difference in people's lives.  Upon entering the room, Erin immediately wheeled herself from dog to dog, petting them and feeding them Fruit Loops (which is what they get for rewards).  While she is normally pretty shy, that went out the window on Saturday when she was with the dogs.  She was giving commands and seemed completely at ease.  Everyone was laughing and saying how cute she was.  The trainers had worked hard to get the dogs ready, and a few of them had prepared speeches for our visit.  They had seen the video of the show on Discovery Health Channel, and so they knew what we had been through.  As they got up to speak, I was touched to my core with what they had to say.  They brought tears to my eyes, and when given a chance to speak myself, I had a difficult time saying what it meant to me to be there.  I want to thank all of those wonderful women for giving so much of themselves to train these dogs.  I have no idea of the circumstances that put them in prison, but I do know that they are all working hard to make a difference now.  They are improving their lives, and more importantly, they are going to greatly improve the lives of the people who receive the dogs they train, one of those being Erin.  We were able to meet everyone and talk to them.  We got to meet the dogs and play with them.  Oh, the women did have a few questions for me, as well as for Erin.  It was so cute!  When they asked her questions, her shyness returned, but she did answer most of them.  The cutest one was probably when they asked Erin what she wants to be when she grows up, and she said she wants to be a cowgirl!  How adorable is that!  Everyone there thinks she should be a dog trainer.  There is no question that she will be able to give commands to her dog when the time comes.  Anyway, there is so much more to say about the visit to the prison, I just can't find the words!

That evening everyone came over to our hotel to go swimming, sit in the hot tub, and eat pizza.  It was so much fun!  Taylor and Marissa were little fish, and we all enjoyed watching Grace show off as she went underwater.  Go Grace!!  Erin and Jade just hung out on the steps of the pool, having fun with Kyria and Heidi.  We went back to our room for a little while before everyone had to leave.  We were all exhausted, but it was just the best weekend!  We took our time this morning getting ready for our return trip.  The wind was crazy through the mountains, but otherwise the drive was uneventful.  I think the girls were happy to sleep in their own beds tonight, but they cannot wait to go back to WV. 

Again, we want to thank the Meek family, Paws4People, and everyone else who made this weekend possible.  We are so excited to get Erin's service dog, especially now after meeting them and seeing what they can do.  She loves them all and hasn't really bonded with one specifically.  We now need to begin our fundraising to help pay for the costs of raising and training her dog so that she can benefit from all of the hard work that goes into this process.  We will let you know as things come up.  If any of you have fundraising ideas, please let us know.  Obviously we are still trying to raise money to modify our home to make it accessible to Erin, and now we will try to raise funds for Erin's dog.  I guess we have quite a job to do! 

We hope you have a wonderful week.  Thank you for checking in again!

Our Love,
The Buckles Family

Just a quick update to tell you about our day yesterday.  After picking Jade up from school, my mom treated all of the girls to the Hannah Montana/Miley Cyrus movie.  We had no idea how expensive it was, and when the guy at the counter said the price, we both thought he was kidding!  Seriously!  Wow!  I guess it wasn't as expensive as going to the real concert, but.... wow.  Anyway, we all had a fantastic time, with Taylor singing every song and bouncing in her seat the entire movie.  It was in 3D, so we had to wear glasses, and Erin and Jade's were off within the first few minutes.  Those glasses just aren't made for little kids!  That's o.k., they loved it anyway.  So, thank you to my mom for the special day.

We hope you all have a wonderful weekend.  Please stay safe and enjoy yourselves!  Much love!

During the past few days, we have had some exciting things happening here.  On Tuesday, after school, we went to pick my parents up at the airport.  The girls were so excited they could barely contain themselves!  After getting home, we had just enough time to eat a quick dinner before heading off to the girls' new singing group.  We were able to sit and watch, and I was a little nervous to see how they would do, especially Erin.  The room is tiered, so Erin pulled up in front of the bottom step while Taylor and Jade stood behind her on the first tier.  The instructor started them off with warm-ups, which included marching in place and doing the grapevine (taking a few steps to the side and twirling on the way back).  My heart sank as I knew Erin had another obstacle to overcome, and I seriously questioned my decision to put them in this group.  However, my fears were unfounded as I looked down at Erin doing the arm movements while the other kids were marching and then wheeling and twirling as the others did the grapevine.  Tears sprang to my eyes as I watched our three little girls participating in the same activity and having a fantastic time.  Erin figured out a way, as she always does, and she proved once again that she can do anything that she puts her mind to.  She may do it differently than everyone else, but she will get it done none-the-less.  So much pride!!!  I was surprised to see how outgoing Erin was during her class.  She did all of the dances and sang the songs quite loudly.  Taylor was thrilled to be there, and she can't wait to make friends.  Her enthusiasm shines through in everything she does!  Jade was the quiet one during class.  While she did participate, and she did everything she was supposed to, she did hang back a little.  This is the little girl who walks around our house singing everything, including conversations!  It seems that she does have a little shyness in her.  Or maybe Erin and Jade are switching personalities once again, just as they did when they were separated.    Anyway, we had so much fun watching them, and we spent most of the hour laughing, because our girls are just so darned cute!

After a late night (too much excitement in one day), Jade and I got up to get her ready for school.  It was nice to have some alone time with her, while Erin and Taylor stayed with Grandma and Grandpa.  On the way to school we talked about their birthday.  I can't believe they're almost 4 years old!  Jade would like to take cupcakes to school and to her singing group.  Sounds like fun!  In between songs from the "High School Musical 2" soundtrack, Jade and I had a good conversation (to and from school).  After school, I had just enough time to come in for a minute, grab Erin and Jade, and take off for our most exciting adventure:  we went to pick up Erin's "new" powerchair!  Our friends, the Pitts family, most generously gave Erin their son Alex's old powerchair.  Since they live in Pennsylvania, we weren't sure how we were going to get it.  Thankfully, a friend of theirs had some business down in this area and agreed to bring the chair with him.  We set up a meeting for today, and the girls and I went to pick up the chair.  Wow, we want to thank everyone involved for getting this chair to Erin!!!  Upon arriving home, she wanted the chair inside immediately.  As soon as it was in the door, she couldn't wait to get in and ride.  She took off like an expert, amazing my parents with her ability to maneuver.  This chair will mostly be for outdoor use, so she can get around independently in the grass, but since we still don't have a ramp, and it was raining this afternoon, she has been cruising around our house.  Too cute!  Jade was actually sad, because she wanted a powerchair too, but when Erin took a break from driving, I allowed her to get in and cruise around as well.  She wanted me to take a lot of pictures while she was driving, so I actually have more pictures of Jade in the chair than I do of Erin.  Funny!  I'll post some this afternoon.

So, it is only Wednesday, and I am already exhausted, but the girls are happy and having a great time... and really that's all that matters!   We hope you're having a great week!  Thanks for stopping by! 

Good news!  Everyone is finally on the mend.  The girls seem to be getting over their colds, and although Erin and Taylor still cough during the day, they all seem to be feeling much better.  Thank goodness!

This will be Jade's first full week at school.  She just gets so excited to go.  Too cute!  After picking her up from school, we went home for lunch and then prepared to go to soccer.  Jade could hardly wait!  This is just so good for her.  She did great at soccer, and she just wishes she could have practice every day.

We spent the rest of the day cleaning, as my parents are coming into town tomorrow.  Too much excitement around here!  Taylor has been my little helper -- she even helped me dust the other day.  She was dusting anything and everything!  If she thinks it's that much fun, she can help me every week!  What a sweetheart! 

Thanks for stopping in to check on us.  Sorry for the short update, but I'm pretty tired tonight.  I'll update again soon. 

Jade went to school yesterday, and she was SO excited!!  She loves to carry her backpack with her little lunch sack inside.  It's so cute, because she's so little and her backpack is ready to fall off any second.  Good thing it's cold outside and she is wearing her big winter jacket, otherwise I think the backpack would fall down around her feet every other step.  She just feels like such a big girl, and we're so proud of her.  Meanwhile, Erin feels really left out.  She's sad because Jade has soccer "school" and preschool.  We try to explain that she will be starting school soon too, and she will be participating in a singing group beginning next week.  I'm sure once she starts she will feel better about it.  Once we figure out all of the new schedules, we'll try to get Taylor back into swimming.  She can't wait!

I just wanted to put a note in here for the Angie that left a note on our guestbook last night.  Please tell the people who just learned that they are expecting conjoined twins to contact us.  We have so much information that we can share with them, as well as the fact that we can be a source of support.  We are a part of a wonderful group of families who have all had or are expecting conjoined twins, and we would love to welcome them into the group as well. I had no other way to contact you,  so I apologize to everyone else reading this.

My parents are coming to visit us next week.  The girls can't wait to see grandma and grandpa again!  It's always nice to have them visit, and we truly appreciate the extra help.  Plus, my dad likes to cook, so I usually don't have to cook at all while they're here!!  Yay!

We are making plans to go meet the service dogs and their trainers soon.  It will be so exciting for everyone.  We will also have the opportunity to spend time with our dear friends, the Meek family, which will probably be the most fun!  We'll let you know all about it after we return. 

The girls are still sick, and I was up half the night with Taylor while she coughed.  It seems that Jade is well on the road to recovery, and Erin seems like she's walking a fine line between getting better and getting worse.  She's got a lot of junk in her throat/chest, so we just encourage her to cough a lot to try to get some of it up.  We don't want any of it to settle in her lungs, because then we will have a problem.  We'll do our best and see what happens.

Have a wonderful weekend!  Please stay safe and enjoy your friends and family!

Well, we were all up early this morning to take Jade to preschool.  I was happily surprised that we made it out the door with time to spare and got to the school early... only to find that there was no school today!  It was a teacher work day, but I didn't know.  We didn't have a school calendar.  I made sure I got one while we were in the office visiting with the very friendly people there!  Jade was once again sad.  That's twice in one week she was disappointed.  Poor thing!  Oh well, we'll try again tomorrow!   

We stayed busy the rest of the day with homeschooling and therapy.  Everyone still has their cold, although Jade seems to be coming out of hers.  Taylor continues to get worse and has been complaining about her ear.  She's also losing her voice.  Hopefully it's not turning into some kind of infection.  We'll keep our fingers crossed!

We hope your week is going well.  We want to thank everyone who takes the time to post messages on our guestbook.  We love reading them, and they mean so very much! 

I forgot to tell you how Taylor's appointment went!  Her neurosurgeon thinks she is doing very well right now.  She has gained some strength back and a little sensation in her foot.  She has grown taller since her surgery, which is a great thing.  We now just have to continue monitoring her and watch for signs of retethering of her spinal cord.  We will see him every 3 months just so he can check on her progress, but right now she is doing well.  That's all we can ask for.

Wow, yesterday was long!  We woke up very early to head in to Children's Hospital for Taylor's neurosurgery appointment.  It was scheduled for 10:15, and if it were possible to drive with no traffic in this area, it would only take us 50 minutes to get there;  however, if you've ever been in DC, you KNOW that there is always traffic!  Anyway, we arrived on time only to wait 3 hours in the waiting room.  Now, imagine sitting in a waiting room packed with people, some of whom are sick, with three little girls.  They sat still, drawing, for the first 2 1/2 hours, but then they got antsy and very hungry.  I had a few little snacks, but I wasn't expecting to be there over lunchtime.  I thought about leaving, but that just would have meant trying to reschedule and possibly another long wait.  After 3 hours we were given a room, where we waited another 30 minutes.  Now, we absolutely adore our neurosurgeon, so it's almost impossible to be upset with him.  In fact, after hearing about his morning, it was completely understandable, and I know that he has taken his time with us when we've just heard some difficult news.  I hope all of the other parents thought about that before telling him just how upset they were.  If it were their child, they would want the doctor to spend as much time as needed to explain the situation and to figure out the best course of action.  As we walked back out into the waiting room, a woman was literally yelling about how she wanted the doctor to reimburse her for her time spent waiting.  I hope that never made it back to him.  When you want the best, sometimes you have to wait.  He sees people from all over the world!

Once we were done, we rushed out of the hospital, trying to make it back in time for part of Jade's soccer practice.  We just couldn't do it (darn that traffic), and so we grabbed some McDonald's and headed home.  The girls deserved a special little treat after being so good all morning.  Jade was pretty sad about missing soccer, but she got over it fairly quickly.

We got Jade's paperwork back from the pediatrician, so if she is feeling well enough tomorrow, she will be off to school again.  She will be so excited! 

It seems everyone now has this cold.  Hopefully Erin fights it easily and doesn't get pneumonia.  We were very lucky last year, so we're hoping she's strong enough to get through it this year as well.  I'll keep you updated.  KJ is feeling much better and has started eating a little bit again.  I haven't heard yet if he went to school today, but I hope he was well enough to do that.

We want to tell Suzanne how absolutely touched we are by her guestbook entry.  What an honor it is that you named your daughter after one of ours!  Thank you for sharing that with us!

Take care everyone!

I was doing so well on updating more frequently, but our week was just too busy to spend any time on the computer.  I'll keep working on it!

Jade's preschool interview and first day went extremely well.  She was so excited to go to school!  We all walked her to her classroom on Tuesday, and I wasn't sure how she would react once we got there.  My worries were quickly put to rest as soon as we walked in, though.  Her teacher helped Jade take her coat off and then asked her if she wanted to do a puzzle with some other kids.  After a quick hug and kiss from me, she was off to make new friends and to learn.  Thankfully I had taken some pictures before we left our house, because I surely didn't have a chance to take them at school.  It felt strange to leave with only two of our girls, and we definitely felt her absence, but we also know that this is a fantastic step for Jade.  Erin was very concerned about leaving Jade at school and truly missed her sister for the three hours they were away from each other.  We arrived early to pick Jade up, and Erin just kept asking when she would come out.  As the students began to come out the door, I hopped out of the van with camera in hand to snap some photos of our big girl after her first day of school.  Jade came out with a huge grin on her face and started running toward me.  I was able to take one picture before I grabbed her in a big hug and asked her how school was.  She was just so adorable, and her teacher said she did a great job!  They seemed happily surprised that she could speak in complete sentences.    Anyway, Jade was invited back to be a student at the school.  Yeah!  We're so proud of her!  At dinner that night, Kevin and I were asking her questions about her day.  We then told her that Erin may be joining her class in a few weeks, and Jade became very upset.  I think she feels like that is "her" thing.  That is her school and her friends, and she's not very excited about having to share.  Remember, Erin often receives a great deal of attention as she has more doctors appointments, and the weeks that we spend up at Kennedy Krieger are focused on her.  Just as she has soccer, Jade felt like school was her own thing as well.  I'm sure once Erin starts going, Jade will be fine, but last Tuesday she wasn't quite as accepting.  Jade wasn't able to return to school the rest of the week for two reasons:  first, we had appointments on Thursday and Friday, and second, we have to wait to get all of her paperwork back from her pediatrician.  I'm sure she'll be in school full-time this week.

On Wednesday we went up to Baltimore for a luncheon at the Ronald McDonald House.  They are working on a project to raise money to remodel all of the rooms in the house, and so there were some very wonderful and generous people who were invited to view the house and listen to the stories of some families who stay there.  I actually didn't know I'd be speaking until we arrived, which was quite stressful.  While we've had to do quite a bit of public speaking since our girls were born, I still struggle with nerves.  I guess I'm glad I didn't know ahead of time, because I actually got a good night sleep the night before!  Hopefully I did a good job articulating what the house and all of the people there mean to us.  It was an honor to be asked to share in that day, and we once again want to thank everyone at the Ronald McDonald House!  The girls can't wait to come back again!

On Thursday we spent the day at Children's Hospital.  No, the girls didn't have any appointments; I'm actually part of a new group called the Patient/Family Advisory Counsel.  We were all brought together to help the hospital achieve the ultimate goal of true family-centered care.  While they do a great job with it already, they are constantly working hard to do even better.  We had a fantastic meeting, and the girls were able to hang out with their favorite people (everyone in the Volunteer Services Office), minus Miss Nadia.  She is getting ready to have her first baby, and we just can't wait to meet him!  Good luck Nadia!

Our Friday was spent working on school work.  When I wasn't helping the girls with that, I spent a good part of the time on the phone making appointments, etc.  As the day wore on, Jade seemed to be coming down with a cold.  She looked tired and seemed like she felt miserable.  Of course, she felt even worse yesterday:  her nose wouldn't stop running and her eyes were "melting" as she calls it.  Poor thing!  Hopefully this goes away quickly and doesn't spread to anyone else.  I got it at the same time as Jade did, so of course my hands are raw from washing them and trying to keep Erin from getting this.  So far so good!

We've had a busy weekend doing things around the house.  KJ was up all night with the stomach flu and doesn't feel much better today.  We hope that he feels better soon, because he is pretty miserable.  Poor guy! 

Taylor has an appointment soon with her neurosurgeon as a follow-up from her surgery.  She will continue to see him every 3 months, probably until she is in her 20's, to make sure her cord has not retethered.  We watch her daily for signs and symptoms, and we pray that we never see them return.  The reality is that she will most likely retether, but our highest hope is that she doesn't have to have another surgery ever again. 

We hope you all have a wonderful week.  Please keep all of the families going through tough times in your thoughts and prayers.  Take care!

Another great day at our house.  This morning I took Erin to get her new AFO's (braces for her feet) while Kevin stayed here with everyone else.  He worked with Taylor on some of her schoolwork and got some other things done.  When we got back we had a quick lunch and then we were off to Jade's soccer practice.  She was soooo excited to have her daddy and brother there to watch!!  She kept looking over with a big grin on her face and waving.  It was very cute!  She's a great listener and follows directions very well when they are working on drills.  However, we've still got a lot of work to do with her on the whole premise of the game.  It seems like she thinks she's out there to just run around when they are playing a game, forgetting that there's a ball she's supposed to be kicking.  If she does happen to kick the ball, there is no particular aim or goal in mind -- she just kicks and then lets someone else get it.  Oh well, she's absolutely adorable, and I guess we have a few more years to work on the rules! 

Jade's quote of the day:  Erin was whining about something this morning during breakfast, and Jade turned to her and said, "Erin, please stop whining.  It's making my elbow hurt". 

Thanks for stopping by!  Have a fantastic week!  Jade has her preschool interview and her first day of school tomorrow.  Wow, wish us luck!

I forgot to tell you about a few more cute things the girls have said/done.  This morning Erin woke up and told me she has a new pet, and it's name is Walrus.  She held out a little red cup that she often keeps little treasures in, and said that Walrus was in the cup.  She proceeded to tell me that Walrus was "princkly".  I wasn't sure if she meant wrinkly or something else, but I just went with it.  She then told me that Walrus was sticky and had thorns.  At that point I figured out that she had meant that Walrus was prickly!  She's so cute.  She has kept the cup, with Walrus, next to her all day, and she was quite alarmed at one point when she said Walrus was missing.  We looked all over, and we were all relieved when Walrus returned to the cup after she called him.  Phew!  Erin also has another imaginary friend named Eric, and she tells us very elaborate stories about Eric and his life.  Much of it we wonder where she got that type of information from.  Hmmmm....

Jade is our little singer in the house.  While Erin loves singing too, Jade will walk around just making up songs, singing with vibrato, and often making up dances to go with them.  Tonight she ran in to tell me she sang Ninja (our cat) to sleep.  She brought me into their room, telling me to be very quiet so as not to wake the cat.  She sat down next to him and continued to sing her own little lullaby. 

Taylor is now really into reading.  She's so proud of herself for being able to read, and she will pick up anything with words to see what it says.  She constantly has a smile on her face, and loves to snuggle more than anything.  She can't wait to start swimming again, which we hope to get her back into soon. 

Oh, for those of you who are interested in reading the latest story that was published in the Washingtonian Magazine in the month of November, you can see it here:  http://www.washingtonian.com/articles/health/5577.html
It's a fantastic article, and we once again want to thank our dear friend Cindy for writing it!

Playing in the snow with the girls was soooo much fun!  Of course, as soon as we got outside it started to sleet, but we didn't care.  We went sledding, had a snowball fight, made snow angels, and started to build a snowman (we never finished it, which they remembered on Friday after the snow was all gone).  Their giggles were music to my ears, and the smiles on their faces made my heart burst with joy!  These moments when they just get to be children make everything else worthwhile.  We came in with rosy cheeks and pretty exhausted (especially me from carrying them up the hill so we could sled down).  It was great exercise, though, so I'm thankful for that -- I definitely don't get enough of it.  As soon as they woke up on Friday morning, they wanted to go outside, but we had to get ready for Jade's preschool visit.  Her interview is rescheduled for next week, as the schools were two hours late that morning.  We did get to go see the classroom and meet all of the teachers.  The girls played while I got a tour of the school.  It's a little hard to believe that our babies will be going to school soon!  They all had fun, but I could see a little nervousness as well.  Transitions are always difficult, especially since they spend almost every waking moment of every day with me and with each other.  I'm sure they'll be fine, and it will be so good for them.  I will continue to homeschool Taylor this year, and then she will enter first grade next year at school.  She's very excited about that!  Anyway, by the time we got home after the preschool visit, all of the snow in our yard was melted.  We live on the sunny side of the street, so ours is always the first to go.  I hope we get more snow this winter!

We've had a great weekend all together.  We truly enjoy having KJ here, and there is just so much happiness in our house when we have the whole family together.  Today Kevin, KJ and I helped Erin to walk on the treadmill using the Litegait trainer.  We walk her for 30 minutes, and she has really been doing a fantastic job!  I could feel her right hip flexor kicking in a lot, especially when we remind her to swing her arms (like we normally do as we walk).  We have to teach her all of those things, as she has never experienced them normally.  Anyway, I could feel some of the muscles in her left leg firing as well.  These are all outstanding things that we celebrate!  Now, she won't be walking on her own anytime soon, but the little things definitely mean a lot to us.  After walking on the treadmill, I put her on her bike for 35 minutes where she rode 4.2 miles.  Great workout! 

Of course, after helping Erin to walk, the men in our house have been glued to the T.V. watching football.  I check in on the games every once in a while, but it's an addiction for them!  I think they have a contest to see who can clap the loudest!  Seriously!

Well, as always, we continue to have issues with Erin not eating.  Today she wouldn't eat her lunch, which probably has a lot to do with the tea party I allowed them to have right before lunchtime -- you know how apple juice can fill you up.  Anyway, since she did not eat her lunch, we told her that she couldn't have any snacks before dinner.  Knowing how hungry she would be, I made her favorite meal of steak, baked potatoes and broccoli.  Yes, I braved the cold to grill the steaks, but it was well worth it.  Erin ate 4 HUGE helpings of steak, 3 helpings of broccoli, her entire potato, and all of her milk!  Wow, we wish we could get her to eat like that as well as eating the other two meals in a day.  We're just happy she's eating something!

We hope you all have a wonderful week!  Please check out Grace Meek's site, as they are working on a fundraiser for the service dogs that would benefit all of the kids working to raise money right now for their dog.  You can check out the Meek family at www.caringbridge.org/visit/gracemeek .  This fundraiser is a contest, and the winner raises $50,000 for their cause, which would be Paws4People.  It's not about how much money is raised but the highest number of people who donate.  Check it out!

Thank you for blessing us with your visit!  We should have new pictures up of our afternoon in the snow within minutes of this post.

Let it snow, let it snow, let it snow!!!  Yay!  It's snowing, and the girls cannot wait to get outside!  We will bundle up in a little while and head out to go sledding.  I'll be sure to take some pictures of our exciting day in the snow.

For those of you in the area, and you need to travel, please be careful!  It's funny to me, coming from Minnesota, to see how everyone panics as soon as the snow flies.  School districts close at the first hint of the white stuff.  In MN, it would have to be blizzard conditions before they would even consider cancelling school.  Well, Taylor did her school work this morning, and we will have our own "snow day" this afternoon.

We had a psychologist come out for a home visit this morning.  That was the last step in our eligibility process.  Now we just have to wait for the Eligibility meeting and IEP meeting, and then we can get Erin into preschool and hopefully receive other services from the school district.  We're almost there! 

Have a great day!!

We were off to the dentist this morning.  All three girls had appointments, and Jade and Erin were pretty nervous about it.  Taylor decided that she would go first to show them how easy and pain-free it is.  She's such a fantastic big sister!!  They all did extremely well.   Jade is still very excited about the fact that she was such a big girl and didn't even cry!  Too cute!  Now they're excited to go back again.  Whew!  That's good!  They all loved that they received new toothbrushes and their own toothpaste.  Oh, the things that excite children!  We want to thank everyone at the dental office for being so wonderful, and for taking such good care of our girls!

We have a few more appointments this week, so I'm sure I'll have more to tell.  Jade is going to have an interview for preschool (the same school Erin will go to once she is deemed eligible for services).  It should be interesting and fun.  Jade is thrilled to be doing something her sisters are not.  I think she feels left out a lot, because she doesn't have nearly the number of appointments that Taylor and Erin have.  This will be good for her.  Just like soccer, this will make her feel extra special! 

I just need to vent for a second.  I know many of you have dealt with car trouble, and it is just so stressful.  In December, right before we went to Kennedy Krieger, we had to take our van in for service.  Now, keep in mind, that is the only way we can transport all of our children, so it can't go down.  $1800 later and one week up in Baltimore, and the problem still wasn't fixed.  We had to come home over the weekend to put it back in the shop.  Now Kevin's car is down and in the shop.  Aaaaahhhhhh!  How frustrating!  We just can't catch a break in the vehicle department!  Sorry, I just needed to get that out.  Everything else is going extremely well right now, so if that is our only issue, I guess I'll take it!  Everyone is healthy here, and that's all we can ask for.

We hope you're having a wonderful week.  Our girls were bouncing off the walls with excitement yesterday, because it snowed for about 45 minutes.  As soon as Jade saw the first snowflake fall, she ran around saying, "Mommy, we need to get our stuff on so we can go outside and play!"  It was so adorable.  I had to explain that there was no snow on the ground yet, so we still couldn't go sledding.  Unfortunately, it stopped snowing, and we are no closer to our winter wonderland than we were before it started.  Oh well, we'll keep the hope alive!

Thanks for all of the thoughts and prayers!

First of all, we want to wish my mom a very happy birthday!  We hope you had a wonderful day!  We love you dearly and can't wait to see you so we can celebrate with you as well!

We had a nice weekend.  We were able to have a pizza night on Friday with Kevin's sister and her family.  We truly enjoy when they are able to come over, and KJ likes having his cousins around to hang out with.  More boys in the house!  Two of our nephews were able to spend the night, but Devon had to be up early for a band competition.  It's definitely nice to have family around us.

On Sunday the girls and I decided to bake chocolate chip cookies for daddy to take to work.  They love to bake the cookies far more than they like to eat them, so it's a win/win situation all around this time.  I'll post some pictures of the baking process, as they all love to take turns putting things in the bowl as well as stirring.

Jade had her second soccer practice today.  That's all she has talked about this past week, so I was glad she had it today!  She has another boy on her team, but she doesn't mind being the only girl.  She's just so cute out there, but she definitely needs to learn to be more aggressive.  We'll work on it!  She has decided that she would like to be called "Jade Hope Soccer Girl"!  So, when daddy came home, that's what he called her (but I hadn't even told him yet).  She just had this huge grin on her face.  Too cute!  At practice, Erin and Taylor were her cheerleaders, which was absolutely adorable.  Good job girls!

Oh, I keep forgetting to write about this, so I will do it now.  Erin was able to completely undress herself from head to toe one evening last week.  We were all so excited, as this is a task she has been working on for some time.  She still cannot take off her TLSO, which is a brace she wears on her torso, because its straps are in the back.  We are so proud of her, and she was extremely proud of herself as well.  She has this way of smiling while trying not to smile that is just way too cute for words.  Way to go Erin!

This week isn't quite as busy as last week, but it's definitely not slow.  As you can see, I'm trying to update more often so they're not as long.  So far, so good!  Oh, please check out Grace Meek's site, as she has a lot of great stuff going on to help with the service dogs she and Erin will be receiving.  We'll get on the ball here soon.

Have a fantastic week!  Thanks for stopping by.

Another busy day today.  Erin had a developmental screening, which is part of this big, long process to determine if she is eligible for any services in our county.  During the screening, she was taken into another room where this very nice woman played with her and asked her questions.  Since we were in the very next room, I could hear some of the conversation they were having.  One of the questions Erin was asked was this, "when you are at school having lunch, do you eat for minutes or do you eat for days".  Erin immediately answered, "I eat for days".  I burst out laughing, for two reasons.  First, it was just so darn cute that she said that, as she does not quite understand the difference yet, but second, if you ate dinner at our house, you would think it takes her days to eat as well.  Not only is Erin a picky eater with most things, but she loves to talk, so we can spend a couple hours at each meal just trying to get her to drink her milk and eat her food.  Most days it becomes very frustrating, but to hear her answer the question in that way was too funny!

Great news!!  We have found a used power chair for Erin.  One of Erin's friends, Alex, just got a new power chair, so his family offered his old one to us.  How fantastic is that?!!  They live in Pennsylvania, so we still have to figure out how we are going to get it, but we're just excited to have found one.  Thank you Pitts family -- this means the world to us!!  Now Erin will be able to play outside with her sisters without having to be carried everywhere! 

For those of you who would like to help with a donation in some way, but you would also like to do something for yourselves as well, here is a great opportunity.  Our friend Carol has started a Creative Memories business, and she is willing to donate 15% of her internet sales to our fund.  This will help us to modify our house to make it accessible to Erin.  Here is Carol's website:  www.mycmsite.com/carolsolomon  For those of you who don't know what Creative Memories is, it is a company that sells all of the supplies to make scrapbooks and albums.  These things make fantastic gifts and are wonderful to put together for family and friends.  Please check it out if you are at all interested.  I made Taylor a scrapbook for her first birthday, and it turned out amazingly well!  You can also contact Carol at: creatingyourmemories@comcast.net 

Oh, some more great news.  Erin has actually gained some weight.  At her cardiology appointment the other day, she weighed 25 lbs 1 oz.  That was with her clothes on, but that still means she's at least back up to 23 lbs without them.  Go Erin!!  She is also taller, which is fantastic news.  We are still waiting on the results of the DEXA scan she had done while we were at Kennedy Krieger.  That's a scan to determine her bone density.  Because Erin can't walk, she doesn't get the same weightbearing through her legs.  She has osteoporosis below the level of her injury (chest level), and she has had two breaks in her left leg.  We're working with some doctors to see if we can increase her bone density, but it's not an easy process.  Anyway, we're excited when she grows!

We hope you all have a wonderful weekend!  As you can see, I am attempting to update more frequently so I don't have to write a novel each time.  I'll do my best.  Check out the pictures of Jade at soccer practice.  Take care!

Such a busy week so far for the Buckles Family!  On Monday we were up at 5:30 a.m. to head in to Children's Hospital for appointments with the cardiologist.  Erin and Taylor both have tiny holes in their hearts, and we need to have them checked each year to make sure all is well.  Also, Erin's heart is positioned strangely in her chest, and they keep an eye on it to make sure it continues to function normally.  Everything looked beautiful on the EKG for both and the ultrasound for Erin as well.  We had some questions concerning Erin's chest wall, because she does not have a sternum.  You can actually see and feel her heart beating without any problem.  Remember, her heart was 60% in Jade's chest when they were conjoined, so over half of it was sticking out of her chest when they were separated.  They had to just kind of tuck it back down, never sure of how it would react.  Anyway, we are always concerned about Erin getting hit directly on her heart and what consequences that may have.  She usually wears a brace on her torso, called a TLSO, that helps to keep her spine straight, so it doesn't eventually curve because she can't hold herself upright.  The TLSO covers her chest, thus acting as a chest protector.  However, as we work to get her stronger in our quest for her to walk someday, she will eventually have to spend less time in the brace in order to strengthen her trunk muscles.  We just wanted to make sure she would be safe going through therapy and daily life without any protection over her heart.  Our fantastic cardiologist, Dr. Sable, wanted to make sure we had the best answer possible, so he went to ask a cardiac surgeon.  To our surprise and relief, Dr. Jonas, probably the best pediatric cardiac surgeon in the world, came into the room to look at Erin.  After examining her chest and discussing what has been going on with her, he reassured us that she should be absolutely fine without any protection.  It would take a sharp upward blow directly to her heart to do any damage.  So, of course, there will always be a little worry about that, but it's great to have those answers.

After leaving the hospital, we came home for a quick lunch, and then we were off to Jade's first soccer practice.  She is THE MOST EXCITED GIRL IN THE WORLD!!!!  Seriously, I'm not sure I've ever seen her more excited about anything.  She was so cute!  She only has one other little boy on her "team", so it's actually kind of nice.  The coach is great and really worked on fundamentals with them.  He made it a lot of fun for them, and Jade can't wait to go back.  Of course, I took many pictures, so I'll try to get some up soon.

On Tuesday, we were once again up at 5:30 a.m. for another appointment at Children's.  This time we went to see Dr. Boyajian, the girls' plastic surgeon.  He checked out Jade's chest, and he said that she would probably need another surgery eventually to revise it, but he's thinking once she's a teenager.  He looked at Erin's chest, and the thing he's mainly concerned about is the skin covering her "defect", as they call it.  Any pressure could cause tissue damage, so we have to be really careful about that.  Some of her other doctors have been concerned about Erin's ribcage being prematurely fused, but he said there's really no way to know except to watch it over time.  Keep your fingers crossed that isn't the case.  We'll see him at least once a year to make sure their chest walls hold up as they grow. 

After our appointments on Tuesday, we went to have lunch with Kevin at his work.  The girls were beside themselves with excitement!  What could be more exciting than going to eat at a chow hall?  I can't think of anything!  A fun time was had by all!

When we got home from that, we were visited by a gentleman who works for an organization called Disability Resources.  He is going to try to help us get a ramp built for Erin.  We'll let you know what happens with that.  He has to find a grant to help pay for it, so we wish him luck with that!

Today we had a visit from a P.T. and an O.T. from our school district.  They are evaluating Erin to see if she is eligible for services from the county.  If she is found to be eligible, she would actually be able to start a preschool this year, getting therapy right at the school.  That would be so fantastic for her to be able to go to school for a couple of hours each day.  I wish Jade could go as well, but we will fill out the application for her to go next year.  Anyway, it was a great visit, and we're excited about the prospect of having services so close to our home.  Thank you Paul and Janet!!

The temperature here has been in the 70's for the past 3 days.  Unbelievable!  So, of course, the times that we weren't in the car or at the hospital, we were outside.  So beautiful!  However, we're still hoping for a few days of great snow so we can play outside in it.  We love to take the girls sledding, and they enjoy building snowmen and making snow angels. 

We hope the rest of your week is wonderful!  Thank you for stopping by -- we truly appreciate how much you care for our family!!  Lots of love!

HAPPY NEW YEAR EVERYONE!!!  We hope 2008 brings lots of joy, laughter, good health and good fortune to all.  2007 was filled with ups and downs for us, just as it was for most of you.  Through it all, we are so thankful just to have our children with us and to have each other.  From the beginning, this journey has been difficult, but we have been so blessed that it brought many wonderful and amazing people into our lives.  It has made us even more thankful for the little moments each day that might have otherwise passed us by.  We now try to "stop and smell the roses" every chance we get.  We know that there are no guarantees in life, so we try to live and love fully each day.

I'm not sure where to start, so I'll try to work forward with the things I haven't talked about.  Two days before Christmas we had a meeting with the fantastic father/daughter team from Paws for People about Erin's service dog.  We are excited to begin the public awareness projects about service dogs, and the wonderful things they can do for people with disabilities.  We will be working on some fundraisers to help raise money to pay for the months and months of training Erin's dog must receive in order to be trained specifically for her.  We will be going to meet the dogs and their trainers soon, and everyone in our family is excited for that opportunity.  The dog Erin receives will not only help her with daily tasks, making her more independent, but it will also help her gain confidence in social situations.  People are often afraid to speak to people in wheelchairs or those who use any type of mobility equipment.  Erin's dog will act as a bridge to close the gap.  Instead of her chair being the first thing they notice, people will see her dog and be drawn in.  Once they speak to Erin and find out what a sweet little girl she is, the chair won't be an issue anymore (at least that is what we hope). 

Christmas was wonderful and overwhelming.  Everyone loved their gifts, and we are once again thankful to the many people who made this Christmas possible for us. 

Two days after Christmas we went to our orthotist, who makes all of the girls braces.  We are so lucky to have found the outstanding people who work so hard to make sure all of their braces and equipment is perfect for them.  Cidny and Mark revised Taylor's brace, and they casted Erin's feet for new braces.  Yay, she's growing! 

I forgot to mention that Erin got a new manual wheelchair right before Christmas.  We LOVE it!  It's much lighter and fits her so much better than her last chair.  She looks great in it, and it should help her shoulders in the long run.  We are still looking for a used power chair for Erin to use outside, since she cannot wheel herself in the grass or up hills. 

We stayed busy all weekend with the kids.  We all enjoyed having KJ with us for the entire break, and we were sad to see him go back to school today.  On New Year's Eve, Kevin, KJ and I stayed up playing games to bring in the new year.  Much fun was had by all; however, it probably wasn't the ideal night for a 15 year old boy!  We definitely enjoyed it though.

Yesterday we met up with our friends Terri and Madi to see the "Alvin and the Chipmunks" movie.  We had a great time, and the girls absolutely LOVED the movie.  Taylor knew some of the lines from seeing the commercials so many times, and she belted them out with gusto.  It was pretty cute.  All three girls were reciting lines this morning at the breakfast table, and our favorite was, "He needs a little help from the LOOOOVE Doctor!"  They all sounded absolutely adorable saying it. 

We are trying to get back into the swing of things today.  Our therapy schedule has been hit and miss since returning from Kennedy Krieger, so that is the most important thing to get back on track.  Oh, we are very excited and proud to say that Erin was able to get her pajamas off all by herself this morning!!  We did not help her at all, and you should have seen the look on her face.  She is so proud of herself and is really starting to feel like a big girl.  It is for this reason that we need to do everything we can to help her be as independent as possible. 

O.k, I have been slowly loading pictures from the month of December onto the site.  I will try to finish that within the next few days.  I hate to give a time frame, since I have been so horrible at actually getting it done.  I will do my best, though.

Just a note to those of you who leave messages on our guestbook:  we cannot see your e-mail address, so we have no way to reply to your messages privately.  Your best bet, if you would like to hear from us, would be to e-mail us at:  bucklestwins@aol.com .   Candy, you were right, this is your former English teacher.  I would love to hear from you again! 

We also want to say a HUGE thank you to those of you who donated money to our fund, as well as those who bought things through igive.com and sent some donations our way.  Every little bit helps, and we could not be more grateful for the kind and generous people out there who have done so much to help our family.  THANK YOU!!!

Have a fantastic day!  Thank you for checking in!