The Buckles Family

After Taylor's MRI a few weeks ago, her neurosurgeon made room in his extremely busy schedule to see us.  The fact that he got us in so quickly made me a bit nervous, but I trust this man implicitly, so I went into it with a sense of calm in that respect.  After some discussion about the things that have been going on with her, he showed us the pictures from her MRI, comparing them to those from the past.  It always breaks my heart to see the pictures of that junky (insert another word if you'd like) tumor so completely enmeshed with her spinal cord, nerve roots and scar tissue.  He explained that, while we've known for the past few years that her cord was tethered, she wasn't exhibiting enough symptoms to be considered clinically tethered.  However, after everything that we told him about recent events, she is now.  She has what's called a syrinx, which is a pocket of fluid in the middle of her spinal cord.  In Taylor's case, it is being caused by the stretching of her cord, since it is stuck down at the base of her spine.  The syrinx itself can cause Taylor to lose function, but the fact that the cord and nerve roots are being stretched just makes it that much worse.  For those of you who have followed our site for a number of years, you may remember me saying that the neurosurgeon did not want to do surgery again unless it was absolutely necessary because of the type and location of the tethering.  The risk of damaging nerves running to Taylor's left leg is higher with this surgery, and he's concerned that she could lose function in her good leg.  Let's just put it out there... our biggest fear is that she will come out of surgery without the ability to walk.  However, we hope and pray that isn't the case.  The neurosurgeon believes it is time to do another surgery, though, because she is continuing to go downhill (losing function), and if we wait too long, she will never get it back.  When dealing with the spinal cord, once you lose the ability to do something, the chances of regaining that function are extremely slim.  He would like to perform the surgery to try to preserve what she still has.  It's not a great situation.  In fact, he told us that, with all of the tethered cord surgeries he's done, there are fewer than a handful that he can picture in his head because they were so bad.  Taylor is one of them.  He said that no matter how much testing they do to find the actual nerves, it is extremely difficult to tell what is spinal cord, nerve roots, scar tissue or tumor.  That's a lot to take in....  Part of me wants to refuse the surgery, knowing that in the past, surgery itself has caused her to lose function.  However, setting my fears aside, I know that we don't have any other choice.  It has been scheduled for April, and I'm trying to get everything in place to make sure all of my girls are taken care of.  Taylor has a lot of questions, and I answer them to the best of my ability.  I try to reassure her that, no matter what happens, it's going to be o.k.  She will be in the hospital for at least 7-10 days, possibly in rehab for another 2 weeks, and recovering at home for at least another week after that.  So, in all, she may be out of school for a month.  Wow!  That's a lot.  The great things is that her teacher and the principal have been AMAZING.  Her teacher said that she will come over to tutor Taylor herself, and the principal is working on everything else, including SOL (testing) schedules.  We have the support from everyone else in the school as well, and I feel absolutely blessed to be where we are.  I'm so thankful for all of my friends there!  There are still quite a few details to be worked out, which is causing me to be pretty stressed, but I have to believe it will all work out.

On a more positive note, everyone else is doing very well.  We finally had Erin and Jade's birthday party last weekend, and they LOVED it!  Much fun was had by all.  Peyton is almost 4 months old, which is just so hard to believe.  I realized this morning that she is the same age as Erin and Jade were when they underwent the separation surgery.  It made me hold her just a little bit tighter today.  Her personality comes out more and more each day, and she's just so stinkin' cute!!  We all ADORE her, including her big brother, and I can't help thinking daily about what an incredible gift she is.

O.k., now that it is after midnight, I need to get some sleep.  This is usually the only time that I have the opportunity to get on the computer.  Thanks for stopping by.  I'll try to update more as the surgery gets closer.

Peyton just turned 3 months old this week, and I realized I've only updated this site once since she was born.  Wow, now that's bad! 

I'm going to do a bullet post just so I can get everything in.  I may elaborate later on a few of the bullets.

• All of the girls are doing extremely well, including Peyton.  Taylor has a few things going on.  I'll explain below.
  
• I'll probably regret saying this, but other than Strep Throat, Erin has not been sick this winter.  She has had no upper respiratory issues since last January!!
• Taylor has been struggling with a few issues related to her tethered cord. 
  
• During a visit to her Orthopedic surgeon, it was decided that Taylor needs ANOTHER surgery on her right foot (relatively soon).  It was a big blow to Taylor (and me), and it's been a bit of an emotional week.
• Also because of the issues she's been experiencing, Taylor will be having another MRI on her spinal cord to see what is going on.  Please pray they don't need to do surgery on her spinal cord.  It would be the third one on her cord, and the chances of some serious complications are very high.
• My parents blessed us with a long visit.  They were here from the end of January until March 7th.  What a Godsend they are!  They truly helped me with everything around here, and I loved seeing them get the opportunity to spend time with their youngest, and last, grandchild.  Yes, they will have great-grandchildren, but Peyton is the last of the grands.  Peyton loved to snuggle up and fall asleep on Grandpa every day.  They are sorely missed already!
  
• Peyton is 3 months old and is an absolutely wonderful baby.  We are all head over heels in love with her, and I can't imagine life without her.  True, she was a surprise, but sometimes God's surprises are simply the best. 
  
• She struggled in the beginning with what we thought was colic but turned out to be minor reflux.  After a short time on medication, Peyton has recovered and is doing very well.  She is eating and sleeping like a champ!
• The only thing that Peyton has to deal with is an umbilical hernia, which, in the whole scheme of things, is extremely minor.  Right now we're just waiting to see if it closes on its own.  If it hasn't closed by the time she is 4 or 5, she may need surgery to fix it.  After everything we've been through with the other 3, that seems like nothing.
• Peyton is smiling and cooing, and she loves to "talk" to us.  We're not sure what she's saying, but she seems to have a lot to say.
• Erin and Taylor were chosen as the student of the month in thier classes for the month of December.  The word of the month was kindness.  Jade was chosen for February, and her word was respect.  I think they embody all of the words, but it's so nice that they can be recognized for being so special.
• Thanks to the Semper Fi Fund, Erin received a new power chair!!  This is HUGE!!  Insurance won't cover a power chair for Erin since she has the use of her arms, but her manual chair isn't always functional for a school setting.  Her new chair is A.MAZ.ING!!!  It can lift her straight up to counter height, and it can take her all the way down to the floor.  She can now fix her own snacks (like toast), and she can get down on the floor whenever she wants to play with her sisters.  She keeps telling me how much she loves her new chair.  Me too!!!!
• If I thought my life was full and busy before, you can just imagine what it's like now.  However, I absolutely love it!!  Peyton completes us, and as a friend of mine so appropriately said about her daughter, Peyton is my Grand Finale!  I'm enjoying each and every second with all four of my beautiful daughters!!
• We have a lot of stuff coming up:  Taylor's MRI, doctors visits (many), surgery, a week at KKI, and a fundraising event to benefit paws4people (the organization that gave us SOLOMON). 
  
• For those of you in this area, please check out the Puppy Prance website.  Come out and join us for a wonderful day.  Bring your dogs, and be ready for some fun!

O.k., I have to go pick up the girls from school.  They have an early release today, and I'm excited to spend some time with them.  Thank you for actually continuing to check up on us even though I've been terrible about updating.  I did post a few photos from Peyton's Birth Day on our other site.  I hope you're all doing well!

She's here!!!!  Peyton Grace Buckles was born last Tuesday, December 6th at 8:37 a.m.  She was 6 lbs 8 oz, and she was 19 inches long.  She is perfect in every way!!!!  She had some issues breathing right away, so she spent her first 24 hours in the nursery (mini NICU), which was hard on me, but it was the best place for her.  She was brought to me on the second day and stayed with me after that.  We are all absolutely head over heels in love with her.  We came home on Thursday, and I've had my hands full ever since! :0)  I love it! 

I have so much to write about, but I truly need sleep more than anything. I'll try to post again soon with pictures on our other blog.  Peyton is adorable, if I do say so myself, and she's such a good baby.

Thank you for checking on us and keeping us in your thoughts and prayers.  The c-section couldn't have gone better and recovery has been uneventful.  Life is good!

Well, this morning we headed to the hospital bright and early for my amniocentesis.  I wasn't necessarily worried about the needle, but I was a bit nervous that I'd jinxed myself by talking about a Tuesday delivery!  The test was done in the morning, and then they sent the fluid off to a lab to be tested.  After the test, I started having contractions every few minutes, and some of them were pretty uncomfortable.  They kept me on the monitors for about 3 hours before deciding to send us home.  I wasn't dilated at all, so unless something changes, everything should be fine.  We should know around dinner time if the baby's lungs are mature enough to be born tomorrow.  Believe me, if she is ready, I am ready!  If she's not ready, then we'll wait a week before delivery, and I'll go back to work for another week.  I guess we'll see.

The wonderful and amazing people I work with threw a baby shower for me on Friday after school.  I can't even express how grateful I am to have them all in my life.  They have been so supportive and encouraging, and I am truly blessed to call them my friends.  I want to thank them all for everything!!

As is our style, we had a few stressful things happen in the last week.  I mean, why would we want a stress-free build up to the birth of this baby?!  Plans have changed, and my sister-in-law was not able to come out.  Thankfully my parents decided they would come for a week to help right when I get out of the hospital.  The biggest issue I will have is lifting Erin, which is something I do ALL the time.  So, having them here, along with Kevin's paternity leave, should keep us covered.

The other stressor we dealt with was some unknown, and still undiagnosed, issue with Jade's eyesight.  On Wednesday, as we were returning from an appointment, Jade told me everything looked gray to her.  She couldn't see any colors.  By the time we got home, colors had come back, but everything was very blurry.  I kept hoping it would improve, but on Thursday morning, she couldn't even read her schoolwork, and she failed the eye test at the nurse.  After a few quick phone calls to her pediatrician, we were on our way to Bethesda to find out what was going on.  Needless to say, after seeing 4 doctors (two pediatricians and two pediatric ophthalmologists), and hours later, we still had no answers.  They were able to determine that it wasn't a neurological issue (yes, they brought up the possibility of a mini-stroke and asked if there was a history of strokes in our family -- well, does her twin sister count?).  Thankfully that was ruled out quickly.  Jade's eyes looked good, inside and out.  By the time we saw the ophthalmologists, her eyesight had actually completely improved and she was seeing 20/20 in both eyes.  Phew!  However, as is often the case with our formerly conjoined twins, we were left with more questions than answers.  I guess we will once again chock it up to a fluke and keep moving (keeping an ever watchful eye on Jade - no pun intended).  She has had no complaints since Thursday evening, so keep your fingers crossed that it doesn't happen again.

O.k., I'm off to finish some last minute things.  I'll try to post a quick update tonight to let you know what the results are for the test.  Thank you for all of the kind words and encouragement!  We hope you have a wonderful week, and we hope to be able to share our new little girl with you very soon!!

Wow, I can't believe it's almost Thanksgiving already!  This fall has really been flying by.  First and foremost, I want to let you know that everyone here is doing extremely well.  Other than a few little fevers/tummy aches, all of the girls are healthy and feeling great (I know, I should NEVER say that).  They love school again this year and are doing very well.  They all just got their report cards and did a wonderful job, as usual.  Their teachers are fabulous, but they always are, and I'm just so happy to be where we are.  Erin and Jade have both lost a few teeth since this summer, and while Jade likes to put her teeth out for the Tooth Fairy, Erin can't seem to part with them and has only put out one.  She's very funny about it, so we save them all in a bag.  She talks about doing it once in awhile when she would like some money to buy something, but in the end, she always changes her mind.  She really makes me laugh!  Anyway, they are all excited for the upcoming holidays, but they are beyond excited for the arrival of their little sister!  I have to say, I am even more excited than they are! :0)

Thankfully, this has been a very uneventful pregnancy for me, and I'm praying that the delivery is the same way.  I've still been pretty nervous throughout, and after my last delivery, it would be weird if I wasn't a little worried.  I wake up each day half expecting something to go wrong, which sounds horrible, but after my last pregnancy, I can't help it.  The thing that made it easier last time with the twins was that I was in the hospital at 23 weeks, I had ultrasounds every day, we knew all of the doctors and nurses, and we knew the plan down to the last detail.  This time around is different because I've been seeing a nurse practitioner, and the delivery plans were very up in the air.  That in itself made me extremely uneasy.  You see, I knew the baby was going to be delivered early, because they don't want me to go into labor.  However, after talking to 2 different doctors, I was given 2 different plans.  I was also going to have to switch my care to another hospital, but nobody really explained how to do that, and when I asked, they all seemed very nonchalant about it.  O.k., I understand this pregnancy is not high-risk and everything is going well, but that doesn't mean it's not a big deal to me!  Thankfully, my last appointment was with a doctor who was wonderfully reassuring.  She remembered when the twins were born and she understood the circumstances.  She said we do not have to transfer my care, she talked me through everything that will happen, and I walked out of there feeling 100% better.  She said she truly just wants me to be able to enjoy this pregnancy and not worry about the delivery.  She did want to move the delivery up a week, so here is the plan as it stands now:  at 36 weeks, which will be Dec. 5th, I will go in and have an amniocentesis done to check on the baby's lung maturity.  If her lungs are mature, delivery will be scheduled for the next day, Tuesday, December 6th!  If her lungs are not quite ready, they will give me a steroid shot to help her lungs develop, and we will repeat the process the following week.  I have to say, I am definitely ready for her to be born, but I'd rather not have another NICU stay, so I'll keep her in there as long as she needs to be.  As I walked out of the clinic that day, it began to sink in that everything had just been moved up a week.  Now, that's not a long time, but when you're talking about the arrival of a new baby, it threw me into high gear.  We still don't have everything that we need, but I've decided to just get the basic necessities and worry about the rest later.  My dear friend and sister-in-law, Sue, is coming out to stay with us for a month to help with everything, especially during my recovery.  I can't tell you how thankful I am for her sacrifice, as well as that of her family, since she will be here over the Christmas holiday.  They all really want her to come.  What a blessing for us!  The girls call her Aunty Soup, which is what Taylor called her when she was a baby.  Sue is just excited to be able to spend so much time with her nieces, as she usually only gets to see them when we visit MN each summer. 

All right, so basically our sweet new baby girl will most likely be here in 2 weeks!!  Wow, so exciting!!!  Oh, and some of you guessed her middle name correctly, it will be Grace.  Our girls will be Faith, Hope, Joy and Grace.  It is through God's Grace that this has all gone so well and she is healthy, as far as we know.  I will try to update on the 5th to let you know what the final plan will be, unless, of course, I go into labor before that, but we won't even think about it for now.

We hope all of you have a wonderful Thanksgiving full of love and family.  Please take care and thank you for checking on us.  We truly enjoy hearing from you, so feel free to leave us comments or send us a quick e-mail.

With the very best of intentions, I left you in July saying I would be right back.  Honestly, life became a whirlwind after that and hasn't slowed down since.  Last time I blogged, I alluded to something stressful going on that had me withdrawing from the bigger world (blog and otherwise), but I am ready to step out into the sunshine and reveal our big news.  Now, some of you will not understand why this has been stressful for us, but that's only because you may not be involved in our everyday lives and don't understand what we have on our plates already.  As you know, Erin and Taylor have medical issues, some are daily things, but some health concerns pop up randomly that put one or the other in the hospital (usually in the winter months).  I am working full-time at their school, and we are finally fairly stable financially (don't get me wrong, we still have many bills to pay off, but we don't have to rob Peter to pay Paul each month).  I know many of you understand this, as there are few that haven't been there.  Kevin's job has gotten to the point where he has so much to do and he works so late that he just stays there during the week and comes home on the weekends. Anyway, there were many other stresses that will make more sense once I tell you....  Last April, Kevin and I found out we were expecting another baby!  Yes, some of you may have to sit down, some of you are jumping around excitedly, and some of you are probably scratching your heads in confusion.  We weren't planning on having another baby, and we've been taking preventative measures since the girls were born, but sometimes those things fail (about 1% of the time).  Do you see why I keep saying we need to play the lottery?!  To say that Kevin and I were shocked is an understatement.  Yes, of course we know how it happens, but we had come to trust those preventative measures.  We sold or gave away all of our baby things years ago. 

Now, before I say anything else, I just want you to know  that while the stress is still there, we are extremely excited about this baby now.  We know what a blessing it is to be given the gift of a child.  There are many reasons why we haven't revealed this news until now, but initially it was just the shock of the situation.  We had to process it and adjust our minds to our new reality.  The second reason is much more personal.  For any family who has gone through a difficult pregnancy where the outcome was uncertain, or for the many who have lost a precious baby, you may be able to understand this.  Once you go through something like that, you are forever changed.  I didn't know how I would handle it, but I found out that I was very nervous about everything.  Once I wrapped my mind around the fact that I was going to have a baby, I was constantly worried that I would lose it.  As with my pregnancy with my twins, I looked forward to small milestones I needed to reach, as in 12 weeks when the risk of miscarriage goes down significantly, or feeling the baby kick for the first time.  Of course, 24 weeks is the biggest milestone for most expectant moms, as that is the time the baby is finally viable and has a chance of survival if born prematurely.  I have to say, though, that I was especially nervous for my 18 week appointment when I had my level II ultrasound.  That was the appointment I found out about my girls being conjoined in my last pregnancy.  Before that, I didn't even know I was having twins!!  Thankfully, we returned to the hospital where the twins were born, and everyone remembered us.  My perinatologist from my last pregnancy did the ultrasound, so he understood where I was coming from with all of my questions, and he took the time to reassure me that everything looked perfect so far.  First and foremost, there is only one baby!  What a relief to be able to see the baby moving around and growing well.  All of the blood tests have come back normal, so as of right now, there is no indication of anything being wrong.  And did we find out the gender of our newest addition at that appointment?  Why, yes we did!  Drumroll please...  our new precious little one is... another girl!! :0)  What an exciting time for us.  Taylor actually was hoping for a baby brother, but it didn't take her long to get excited about another little sister.  All three girls cannot wait until she is here, and they all plan on helping out as much as they can.  Erin seems especially excited, as she is the one who usually needs the most help, and she looks forward to being able to help me with the baby.  She often talks about being able to push the stroller.  So cute!  They also love to come up with names they would like.  The middle name was easy, and fits in well with the other three:  Faith, Hope, and Joy.  Can anyone guess what we've chosen?

I'm trying to anticipate some of the questions I will get.  The baby is due January 2nd, but she will be born before that.  Because of the type of c-section I had to have with Erin and Jade (classical), I will need to have another one this time.  They don't want me to get close to labor, because there is a risk of tearing with hard contractions.  So, as of right now, the plan is to do an amnio at 36 weeks to see if her lungs are developed enough, and if so, she would be delivered around 37 weeks.  That would put us delivering somewhere around December 12th.  I'm actually excited to be delivering before Christmas... what an amazing present!!  I will work up until the delivery date as long as nothing crazy happens, but like I said, so far everything looks great.  This pregnancy has been very easy physically (what a relief), and I'm hoping my recovery from surgery is easy as well. 

I'm sure there will be more questions, and please feel free to ask.  We are about to embark on another exciting adventure, and I'm inviting you all along for the ride!  I can't guarantee I'll be better about blogging, but I'm sure going to try.

O.k., I'm not sure how many people still try to check for updates anymore after my 3 month absence.  Honestly, I can't believe it's been three months!  There has been a lot going on that has me stressed to the point of withdrawing from most but my closest friends and family; however, I am back and will fill you in fairly soon.  Thank you for being so loyal, caring and understanding and for sticking by us through thick and thin. 

Last November, we were invited to New York to appear on the Rachel Ray Show (http://www.rachelrayshow.com/show/segments/view/all-new-conjoined-twins-story-erin-jade/).  We did the taping on November 11 (Veteran's Day), but we didn't know when the show would air.  Well, it is airing today (for some of you, it has already been on).  I apologize for the lack of advance warning.  We are on during the first segment, and from what I've heard so far, it turned out pretty well. 

The girls and SOLOMON are doing great!  We are definitely enjoying the summer!  We are visiting family right now, and it's been wonderful to have some down-time, but we have a lot of fun things planned as well.  I had to take SOLOMON to the vet last week for what we thought was a serious soft tissue injury to his back left leg.  Thankfully, after some pain meds, he made a quick recovery and is running around like nothing happened.  Phew!!  That's the last thing we need right now, and we're glad it turned out to be something simple.  Hopefully that will be the only trip we have to make to a doctor while traveling!

Thank you again for checking on us.  We truly appreciate all of the support!  I PROMISE to update again soon.  :0)

Apparently I've been living a computer-free, all-consuming existance for the past few weeks.  Honestly, now that I'm working full-time, I don't have a second to do anything until the girls are in bed, and by then I'm too exhausted to think about getting on the computer.  I'm sorry (again) for not doing a better job of updating.  I can see by our traffic (or lack there-of) that we are losing our followers, and quite honestly, I can't blame you.  I'm just no fun anymore! :0) 

O.k., I know I'm going to regret saying this, because every time I do, it backfires, but....  We are all doing really well right now.  Everyone is healthy.  Erin is doing fantastical (I know, just go with it), and she hasn't been hospitalized in almost a year!  We don't have to go to the hospital very often anymore, and we feel just plain normal (well, as normal as we can be).  Life is good in the Buckles household, and we are EXTREMELY thankful for that!

The big news around here is that Taylor finally got her cast off for good almost two weeks ago (has it really been that long?  Goodness!).  She had to wait until a new brace was created for her, and then the orthotist was able to get rid of that blasted cast.  I can't even explain to you just how excited Taylor was (although she wasn't thrilled with how her leg and foot looked), but I have to say that I was a tad bit on the happy side as well.  It was kind of difficult having a kiddo in a chair and one on crutches.  I'm not complaining, because I'm just grateful to have those sweet girls, but it's much better now that Taylor can walk again.  The new brace looks just like Erin's (although much bigger), and doesn't make for an ideal gait (the way she walks), but it is helping a great deal.  It's keeping her foot in the proper alignment until that tendon transfer is completely healed and solid.  We have to protect it at all costs!

So the great joy of our week thus far (said quite sarcastically) was going to an appointment with Taylor's orthopedic surgeon.  The appointment time was 8:30.  We finally saw the resident at 11:15, and the surgeon came in at about 11:22.  We were done by 11:30, and we weren't able to spend the whole time with the doctor.  She was in and out of the room.  So, in total, I would have to say we spent about 5 minutes with her.  Now, don't get me wrong, they were 5 quality minutes, and she is an absolutely fantastic surgeon, but they need to help her manage her schedule better.  The fact that everyone wants to see her says a lot about her skills as a surgeon, but it's just plain ridiculous to wait that long to see a doctor; especially when they get so upset if we're ever late.  ANYWAY, the good news is that she thinks Taylor's leg looks great. The bad news is that she can't promise Taylor won't need another surgery at some point.  Because of her tethered spinal cord, Taylor's right leg and foot are constantly changing.  I was less than thrilled with the wording the doctor used when explaining why we need to protect her foot so agressively.  She said, and I quote, "We pretty much blew our wad with this one, so we have to protect that foot at all cost".  Well,.... o.k.  Ummm, may I point out that my three young daughters are sitting in the room listening quite attentively to every word you are saying?  Wonderful, I imagined myself explaining what it means to blow your wad to a 9 year old and two 7 year olds.  And for those of you reading this who are under the age of 18, it's inappropriate and something you shouldn't ask about.  And I digress....  back to the good news.  The doctor gave Taylor some exercises to do with a thera-band to strengthen any muscles that should no longer be overpowered by the one they moved.  We'll see what happens.  She does say that her foot feels weak an floppy, which is, honestly, not the ideal wording for your FOOT, but hopefully that will improve in time.  After the appointment, we were able to improve the visit considerably by stopping in to see Grandma Terry and Miss Nadia!  We absolutely love those ladies and can't thank them enough for everything they do for our family.  We were even able to see Miss Nicky and thank her again for arranging for Jade to be allowed to stay overnight in the hospital with Taylor and I after the surgery.  We recognize that it certainly was not easy and doesn't happen often.  Thank you for moving mountains for us that day!

Well, I am once again at the point where my eyes no longer want to stay open.  I will try to post new pics soon.  We hope everyone is having a wonderful week. Please take care of yourselves!

Happy belated St. Patrick's Day!  It turned out to be a lucky one for us, because I was able to capture something amazing on video.  As I was going to deliver materials to a few classrooms, I came upon Erin and her physical therapist, Paul, walking down the hall.   Now, you know I've seen Erin walk in her braces and walker hundreds of times, but yesterday was different.  She has always needed someone to hold her from behind to help get her legs through on each step.  What I saw blew my mind!  You'll just have to watch it for yourself and tell us what you think.  Here is a link:  Erin walking

We hope you have a wonderful weekend.  I know we will!!

As many of you know, Erin has two different wheelchairs.  She has a manual chair, which is the preferred chair of all physical therapists, and she has a power chair, which is the preferred chair of Erin.  Actually, she loves her manual chair, but her power chair is so much more functional for her at school or any time she wants to be outside.  Not only does it go fast, it can go over almost any terrain, and Erin can adjust the height for different size tables or desks.  The only problem is that our insurance will NOT cover a power chair for her, because she has the use of her arms.  It doesn't matter that it would improve her quality of life, it all comes down to the bottom line.  However, there are wonderful people out there who choose to donate their equipment after they are done using it, which is how Erin was able to get her power chair (she is on her second one, both of which were donated).  She has had her current power chair for about 2 1/2 years, and we're not sure how old it was when we got it, but it has been wonderful.  Of course, just like everything else you use every day, it is starting to wear out.  Before we left for Erin's Make-A-Wish trip in December, she got a flat tire on the chair (yes, that's actually possible and really did happen).  It cost us over $850 to get all new tires... for a wheelchair.  I'm fairly certain you could get new tires on a car for less than that!  Anyway, we had to take out a loan in order to pay for it.  We did buy the "no-flat" tires, though, so we should never have to worry about that issue again for as long as she has the chair.  Phew!  Anyway, for the past month, her batteries have been draining very quickly.  She used to be able to run it for a couple of days before needing to charge it, but now the batteries drain within a few hours (and that's with intermittent use).  We've had to take both wheelchairs to school each day in case her power chair died.  Well, yesterday was the last straw for me when we went to the hospital.  The batteries were completely charged when we left our house.  The only time she used it was to get from our door to the lift on the van.  When we got to the hospital, the battery light was already in the red zone (danger, danger), and I was worried all day that it would die completely and I would end up pushing a 300 lb. power chair, with no handle, through the hospital.  I pretty much made Erin sit still unless we had to change rooms.  As soon as we left the hospital in the afternoon (with a flashing red battery light, meaning imminent death), and after I plugged in my cell phone which the battery had completely died on (do you see a trend?), I called our equipment vendor to ask about battery replacement on the chair.  Do you want the good news or the bad news?  The good news was that he said he could replace the batteries right away.  The bad news?  The batteries cost $158 each, and she needs 4 (yes, four).  Wait, that doesn't include the cost of labor.  So, truthfully, we were looking at about $700 in order to replace the batteries... on a wheelchair.  How much is a car battery?  Somehow this just doesn't seem right!  Anyway, what else could we do but take her chair in today to get the work done.  Believe me, we've already been through the sad days of her not wanting to play outside because she can't do anything in her manual chair.  She loves to be outside, but just think about how you would feel if everyone else was running around and playing, and you pretty much had to stay in one spot.  I know I would hate it.  We are determined not to let that happen to Erin.  So, at this point, whatever it takes to make sure she has the equipment she needs to be as mobile as any other 7 year old, that is what we'll do.  When we took the chair in after school today, our equipment guy had a late Christmas present (or very early birthday present) for me.  He found the batteries at a lower cost ($116 each), and he knocked a bunch off the labor cost, so we only ended up paying $496.40 for everything.  Jimmy, if you're reading this (which I'm sure you're not), we can't even begin to thank you enough!  So, ok., that is still a heck of a lot of money to pay for batteries... for a wheelchair... but I can promise you it will be worth every penny!

I just wanted to write a quick note to tell you about our day.  I was up this morning at 4:30 to get everyone ready to head to Children's for Taylor's follow-up appointment with her orthopedic surgeon.  Taylor was pretty certain that she was going to get her cast off, even though I kept telling her it was possible that the cast would have to stay on.  We got to the hospital for her 8:30 a.m. appointment, and then we waited... and waited... and waited.  We weren't given a room until 11:00, and the doctor finally came in at 11:10.  We talked for about 30 seconds before she left to call our orthotist, and she returned 30 minutes later (not kidding).  The issue was that Taylor had a tendon transfer during her surgery.  That transfer needs to be protected for 3 months (we're only 5 1/2 weeks out), but the surgeon doesn't necessarily want her in a cast for the entire time.  We need to have a brace made that will protect her foot at all times -- no walking without it AT ALL.  Once a plan was in place, we were taken to the casting room where Taylor's cast was cut off.  What a relief for her!  She also had a button (yes, a real button -- I'll post pictures soon) attached to the bottom of her foot that has been holding the tendon in the proper position until it had time to heal.  The button was removed, and then we waited another hour until someone could make a mold of Taylor's foot for the new brace to be made.  Once the mold was done, Taylor's foot was re-casted.  Yes, she was less than thrilled to have another cast, but being Taylor, she took it in stride and made the best of it.  She chose a different color this time, going with a bright pink, which is actually very cute.  We finally left the hospital at 2:41 (ahem, that minute really did make a difference), but we still had to drive the new foot mold out to our orthotist's office about 45 minutes away (not on our way home).  We still hadn't eaten lunch, so we quickly went to McD's and then went to the orthotist.  Of course, when we got there, we were told they would not even look at our stuff until we have authorization from insurance.  Now, since we have a case manager, it shouldn't be too difficult to get, but our orthotist is notoriously slow.  Honestly, in most situations, we don't mind, because he does a fantastic job, but in this case we would like it to happen quickly.  The sooner the brace is made, the sooner Taylor can be out of her cast.  I guess you know what I'll be doing for the next few days!  Yes, I'll have to be THAT mom.  Ha!

O.k., I need to go, as I am completely exhausted.  I'll let you know as soon as they start on the brace.  Any guesses as to when it will be done?  Taylor's next appt. is in April; will she be out of her cast yet?

Oh, I posted a few new videos to youtube.  There is a link to one of them on our homepage.  It is of Erin speedwalking in her KAFOs, and we are just so proud of her.  She works sooo hard!  Actually, the last time she walked, her physical therapist didn't even hold on to her.  He sat in front of her and just guarded against her falling.  I didn't get to see it, but by all accounts, it was AMAZING!  There is also a really quick video of Jade learning to rollerskate, but I will have to take some video of her in her new rollerblades.  It didn't take her any time at all to become really good!  What a superstar!!

Gotta go!  Have a fantastic week! 

Well, since I know y'all love me so much, I'm sure you're willing to forgive me for not posting the baby pictures of Erin and Jade yet!  I had big plans for last week, but it picked up speed as we got closer to the BIG day, and I absolutely did not have time to get it done.  I did look through them, and I reminisced with my parents about the day the twins were born.  I think every second of that day is etched in my memory forever (except when I passed out from the pain of the c-section before the epidural had a chance to kick in).  It was one of the most frightening and blessed days of my life, and I am so thankful for that experience with my girls.

Another day I am thankful for was last Saturday, February 26, 2011.  We were actually able to have Erin and Jade's party on their birthday.  They asked to have the party at Chuck E. Cheese's, and since it's so much easier to have a party anywhere outside of our house, we readily agreed.  The place was crazy busy, and it was difficult to even move around, but the girls loved it!  They had so much fun and were extremely excited that all of their friends were able to come.  After the party, my parents took us out to eat at Applebee's, which perfected a wonderful day.  Both of the girls said this was "the BEST birthday EVER"!!!

We want to thank all of you who took the time to send beautiful birthday messages to Erin and Jade!  They loved reading every single one and couldn't believe people from around the world were wishing them a happy birthday.  Love it!

I need to go for now so I can actually get some sleep tonight, but I really will try to post some pictures soon.  I did get a few very cute photos on their birthday.

We hope you have a great weekend!

Can you believe our twins are almost 7 years old?!  We can't!  Wow, I used to laugh when I would hear people saying things like that, but seriously...!  Birthday party plans are in the works,  the girls are counting down the days, and I am astonished that they are going to be 7.  How did that happen?  Honestly, I have to say that their first year was literally a blur, almost as if that belongs in its own separate catergory.  It was filled with so much stress and so much love, so much prayer and so much focus.  There were days I wasn't sure I would make it through, but then I looked around at our family and knew that we could make it through anything together.  When I think about everything they have been through, I'm amazed that Erin and Jade are here with us and doing so well.  They are, well... miracles!

In the days leading up to their birthday, I will try to share some photos and stories from their birth and early days. 

Taylor is doing very well right now.  She is a rock star with her crutches, and her foot is feeling pretty good.  She went through 2 days last week where she was having a lot of tingling and pain in her right foot, in the spot where the surgery was performed, but also a spot where she normally has little to no sensation.  It had us more than a little concerned.  I left a message for the doctor on Thursday (who still hasn't called me back), but the pain went away on Friday.  It hasn't happened again, so we're not sure what caused it, but we're hoping it was nothing serious.  She also went through another evening of intense abdominal pain on Thursday, but by mid-morning on Friday it had resolved itself.  Whew!  I think we were all bracing for something bad, but thankfully it didn't last long.  She also had a sore throat for about a week, but her strep test was negative.  Gotta love those viruses!

The girls were all invited to a birthday party last weekend for another set of twins from school.  Taylor wasn't feeling great, but Erin and Jade really wanted to go.  The party was at a local roller skating rink, and all I could think about were the skating parties I attended when I was younger.  I used to LOVE to roller skate, and I just knew that my girls would love it too.  I haven't been to any other rinks than the one I used to attend, but I was SURE that it would be quite similar.  Of course, in my mind, it had to be wheelchair accessible, but let me tell you, it was NOT.  All the way around the rink was a step up onto the side.  There was not one place that had a ramp.  And, of course, Erin was in her powerchair.  Well, we don't let a lot of things stop us in this family, so with the help of the twins' dad, we got Erin down onto the rink... only to be told less than two minutes later that she had to get off because it was "adult skate".  I made the guy who told me she had to get off help me lift her chair, all 250 lbs of it.  That'll teach him!  Of course, the next time I got help getting her on the rink, the same thing happened, literally.  It was a different guy this time, and he actually returned later to help me get her chair back down onto the rink.  And now, the girls LOVE to skate, so I guess I'm going to have to pursue this one and see if they can get a ramp for any wheelchair users wanting to skate.  Jade now wants her own skates, preferably for her birthday.  We'll see if we can make that happen! And Erin asked me if she could put skates on her feet the next time we go, and I could hold her up to go around the rink.  Awwww, melt my heart!  How could I say no to her? 

I've uploaded a few new videos to youtube, even a couple really quick clips of Erin and Jade skating.  I'll post the links next time, but you may be able to find them if you search for coachbuckles on youtube.com.  Let me know if that works.

Have a great night and a wonderful week!

We would like to take a moment to wish all of you a very Happy Valentine's Day!!  We hope your day is wonderful and filled with lots of love!  I would also like to tell my Valentines just how much I love them!  You all have my heart, and I am blessed beyond measure to have you in my life.  Kevin, there are just no words to tell you how much I love you!  Today is an extra special day for us, and the significance of it will never be forgotten.  Happy Valentine's Day, my sweet man!

I have posted some new pictures to share with you.  Please take a moment to look at them here. 

Have an amazing day!!

Taylor had surgery on her right foot last Friday, January 28th.  It went well, although it was more extensive than they originally thought it would be.  Just to give you a little background (for those who haven't been following us for very long), Taylor was born with a tumor (lipoma) on her spinal cord.  We didn't know about it until she was three years old.  She had some issues, and after months of going from one doctor to another, Taylor's Orthopedic surgeon ordered an MRI on her spinal cord to rule out Spina Bifida and CP.  Immediately after the MRI, she took us into a room and told us that there was a tumor.  The tumor is located at the L1-L2 level, and it was causing her spinal cord to be tethered (held down at the base of her cord).  As she grew, her spinal cord was getting stretched, and that caused her to lose function in her bladder, bowel, and right leg (the tumor is mostly on the right side).  If we chose to do nothing, Taylor would eventually be paralyzed from the waist down.  With the surgery, paralysis was still a possibility, but it was also the only chance she had of maintaining any function below her waist.  Surgery was performed on July 15, 2005 at Children's National Medical Center in Washington D.C.  The neurosurgeon was able to untether her cord, but he was only able to remove about 60% of the tumor.  After the surgery, he told us that whatever function she had already lost would most likely not return.  He also said that there was a chance she could re-tether somewhere down the road, and we could be looking at more surgeries on her spinal cord.  Each return to the OR poses a much higher risk for Taylor and her spinal cord.  Taylor did fairly well for almost 1 1/2 years, but in March of 2007 she seemed to be going downhill.  After an MRI, her neurosurgeon told us that he believes her spinal cord is already re-tethered.  However, he would not perform another surgery until she significantly started to lose function.  In August of 2007, the time came where her loss of function was becoming alarming.  Taylor returned to the operating room for her second surgery on her spinal cord on September 11, 2007.  Immediately after surgery she lost all bowel and bladder function, and she wasn't able to walk.  There was great fear that she, too, would have to use a wheelchair.  In fact, she did have to use a wheelchair for a short time, until she regained some strength and the ability to walk.  Taylor has had some return of function to her bowel and bladder, but we do have to catheterize her every 3 hours.  She is retethered again, but the neurosurgeon says it is much too dangerous to do another surgery on her spinal cord unless we absolutely have to.  We just have to deal with the symptoms as best we can.  She lost sensation in her right leg from the knee down.  Her calf muscle is denervated, which means the nerves to that muscle no longer function, because the pathway through her spinal cord was damaged.  Since the nerves do not function, that muscle no longer functions either.  Taylor has no plantar flexion (which means she cannot point her toe).  Our muscles all work together in our legs to make sure we walk correctly and our feet are pointed in the proper direction.  When those muscles aren't working correctly, things can go wrong.  Taylor doesn't walk correctly and her foot needs a lot of help.  She wears two different braces to give her support and to help her have a push-off when she walks (otherwise she walks mostly on her heel).  This was Taylor's second surgery on her foot, and the doctor said the first one didn't work.  We're really hoping this one does something for her.  Here is what they did:

• They took her tibialis anterior tendon (it connects the muscle that runs down the front of your shin to the inside of your foot.  You can feel it at the front of your ankle when you lift your foot up), disconnected it and moved it over to the outside of her foot.  In order to reattach it to the bone, the tendon was pulled through a hole in the bone and sutured (stitched) in place using thread attached to a button on the bottom of Taylor's foot.  Yes, I do mean an actual button like one on a shirt.  The button will remain in place until her cast is removed.  They will then cut the thread holding the button and the tiny hole will close soon after.
• Taylor's tibialis posterior tendon was pretty tight, so the surgeon took some time to "release" or loosen that tendon. 
  
• Surgery started at 12:40 and finished at 3:40
• When Taylor came out, she was EXTREMELY groggy (almost alarmingly so at first).  She was in a lot of pain and pretty upset.
• She was admitted for an overnight stay in order to get her pain under control.  Jade and I stayed with her (thank you, Miss Nicky for making that possible!!!).  Kevin had to stay home with Erin that day because she had Strep Throat.  It was difficult for him not to be there. 
  
• By Saturday morning, Taylor's pain was under control.  We were all ready to head home.  She was discharged at noon. 
  
• Taylor chose a red cast, and she is doing extremely well on crutches this time.  We ordered a wheelchair for her, just in case, but she hasn't even been in it once.  Her sisters tried it out for her! :0)
  

I want to let you know that Taylor is now doing very well emotionally.  All other issues with her bowels have been resolved, and with all of this behind her, we seem to have our happy little girl back.  It is such a relief to see her smile and hear her laugh.  We're so thankful that everything with her is on the upswing!

Everyone else is doing well.  Erin has recovered from her bout with Strep, and she just finished the last of her antibiotics today.  Keep your fingers crossed that we're done with illness for the year. A girl can dream, right?!

Anyway, I have another update coming very soon, and I'll try to upload pics from the surgery today.  Happy Super Bowl Sunday!

Do you ever feel like you've been thrown a curve ball?  You know, something far different happens than what you were expecting.  Curve balls aren't always necessarily horrible, but they definitely throw you off.  We've been thrown a curve ball with Taylor, and it has certainly affected her (and us) over the past few weeks.  Please don't get me wrong, the things that are going on could be FAR worse.  It's not life-threatening, it's not mobility threatening, but it is something that kind of knocked us off balance. 

Taylor has been on an emotional rollercoaster since it was decided that she would have surgery on her foot this month.  The biggest issue is not that she has to have surgery but the uncertainty under which the decision was made.  The surgeon, who we love, was truly struggling to decide what type of surgery she should perform.  There was no question that Taylor needed surgery on her foot, but she wasn't sure what she could do to give Taylor the best chance of a decent outcome.  All of the decision-making process took place in front of Taylor, out loud, as the doctor went back and forth with herself about what she should do.  The first thing she said was, "Well, that last surgery didn't work, did it?"   Some of the other words spoken were things such as, "Well, I could do this, but she wouldn't like it" or "I don't know, I could try this..." or "I don't think this will help her".  It all ended with her saying that she would do her best, but she couldn't make any promises.  Now, as an adult, I can understand her intent and her dilemma.  At nine, Taylor understands neither.  We've been dealing with some anxiety issues since then, and since her surgery is quickly approaching, it is only getting worse. 

Now, unfortunately, that hasn't been Taylor's biggest struggle.  Soon after we found out that she was going to need surgery, she started having stomach aches, every day.  At first we thought they were anxiety related, but after it went on for awhile, we knew it was not that.  We had a pretty good guess what the culprit was, but we needed it confirmed.  I took her to the doctor before Christmas, and after an x-ray of her abdomen, we saw that we were right.  Let me interrupt myself here by saying that all of Taylor's medical problems are related to her tethered spinal cord:  foot, bowel, bladder... everything from the waist down.  Fun for a kid of nine years old.  Anyway, even though we give her Miralax everyday, Taylor somehow got really backed up (in her bowels), and it was causing her a lot of pain.  The physical pain wasn't the only issue.  She was really emotionally drained and was struggling daily to keep it together.  There were some days I was called up to the nurse's office 8 or 9 times (in one day).  My heart was breaking for her, and I didn't know what else to do.  I knew once we could solve the physical problem, the emotional health would bounce back as well.  We tried a few different things to solve the problem, but when we went back to the doctor last week, we had made very little progress.  Wow, that was discouraging and made me want to cry (for Taylor).  She now has to see a pediatric GI specialist to figure this out.  When I called, I couldn't get an appointment for almost 3 weeks.  Really?!  That's just perfect!  So, in the meantime, I've actually been searching for, and found, something to help.  I think she's doing much better!  But we're still going to the specialist to find out A) why this happened, and B) how can we prevent it from happening in the future.  Needless to say, we've been dealing with fewer tummy aches and a much happier little girl.  She does have a tummy ache today, but there may be a few other factors playing into it...1) Jade was up all night throwing up, so it could be a stomach bug  2) My sister is in town visiting, and Taylor is really upset that she is leaving on tomorrow and 3) Taylor's surgery is just one week away, and she's just not sure what to think about it.  She doesn't quite understand what they're going to do this time (we've tried to explain, but we don't have a firm grasp on it either). 

This is just a glimpse into a few of the things we've been dealing with over the past month (there's always additional stresses).  Believe me, this is just a curve ball and nothing more, but I think I'm ready for the inning to be over.  Better yet, let's play a new game, one without curve balls.

We just want to take a moment to wish everyone a Merry Christmas!!  If you get a chance, check out the girls' Christmas pics with Santa (the REAL Santa).  So far we've had an amazing day just enjoying our family.  Everyone is on the road to recovery and feeling much better.  Erin and Jade still sound pretty junky, but as long as we continue their treatments, hopefully that will get better soon as well.

You all mean a great deal to us, and your support over the years has been something we cherish.  Please know that you are in our hearts, now and forever. 

Merry Christmas!

Wow, so much has happened since I last posted; I'm not sure where to begin. 

Erin did end up with pneumonia and barely recovered in time for us to go on her Make-A-Wish trip.  I spoke to her pulmonologist two days before we left, and he decided that we should still go, because, as he said, there is a really good Children's hospital in Orlando if we needed it.  Comforting (I think).  Anyway, we literally counted down the days (and hours) until we left, and excitement filled our house.  On Saturday, December 11th at 8 a.m. a long, black limosine pulled up to our house to take us to the airport.  The girls couldn't get out the door fast enough, and they barely paused long enough for me to get our driver to snap a quick picture.  Kevin, unfortunately, had to drive behind us in the van so we could take Erin's powerchair.  Five amusement parks would be waaay too much for Erin in her manual chair.  Since they don't usually outfit limos with wheelchair lifts, that was our only option.  I offered to drive the van so he could enjoy the limo ride, but he insisted that I go instead.

As much as I dread going through airports, I do want to report that this trip has been the easiest by far going through security.  It's probably because we've done it a few times, and we know what to expect.  We know that Erin and Taylor will be pulled to the side and "wanded" (is that a word?).  We also know that they will look through our medical bag.  It all went very smoothly, the TSA agents were friendly and kind, and it was done quickly.  Easy Cheesy!  Not only did that happen on the way to Florida, but we also experienced the same thing on the way home.  It was actually quite surprising just how easy it was.  Again, probably from past experiences.  We do as much as we can ahead of time to speed up the process and make things easier on the girls and us. I just wanted to let you know that, with as many horror stories we hear about airport security, there is at least one positive story as well.

Here are just a few of the things that happened while we were in Florida:

• The weather was nice on the day we arrived and the day we left.  Every day in between was either raining or freezing (literally).  The forecast showed temps in the 50's before we left, but it actually went down into the 20's.  Let me just say that we definitely weren't prepared for that!  If I ever post pictures (I'll try), you may see the same outfits over and over again.  Don't worry, we had a washer and dryer in our villa.
• We went to the Magic Kingdom, Hollywood Studios, Animal Kingdom, Universal Studios (Islands of Adventure), and Sea World.  In that order.  Despite the weather, we had a fantastic time!
• We stayed at the amazing Give Kids the World Village again.  I can't even begin to tell you how wonderful they are!  They truly help make a child's wish come true!  They even remembered us from Taylor's wish last year.
• Jade ended up getting a stomach bug on our second or third night.  It was not pretty.  We were very thankful for our washer and dryer.  Poor thing.  She was feeling a lot better by the next day (a little weak), so we bundled her up, put her in a stroller, and off we went again.
• I didn't take nearly as many pictures as I usually do.  Again, it was either raining or too cold.  However, don't worry, because I did get some great shots.
• The day before we were scheduled to leave, Erin woke up with a fever.  It was in the 100-101 range.  We gave her some Motrin and off we went for our last day at a park.  She told us that night that her throat and tummy hurt.  We were thinking Strep.
• On the day we were to leave (Friday), Erin woke up with a high 102 temp.  Motrin was not doing a very good job of keeping her fever down.  We just wanted to get her home and to the Urgent Care clinic.
• The limo picked us up at the airport again, and Erin was able to enjoy part of the ride home.  We even stopped for McDonalds on the way home just for fun.
• When we went to Urgent Care, even though the quick Strep test came back negative, the doc thought she had classic symptoms.  She prescribed an antibiotic, and we were on our way.
• Two days later (Sunday) Erin woke up with a junky cough and a temp of 103.  Yuck!  Back to Urgent Care, where they did a flu test on her.  Guess what?  It was positive for Influenza A.  That was a little scary!  It was too far out from her first symptoms to give her Tamiflu, but they wanted to keep her on the antibiotics to try to prevent a secondary pneumonia infection.
• On Monday afternoon, Erin's temperature went up to 105.3.  Again, not her highest, but still pretty frightening.  I immediately called her pediatrician who wanted to see her the next day.
• Oh, in the meantime, Taylor has been having a lot of stomach pain.  We decided to have her seen by the pediatrician as well.
• Tuesday we made the trek to Bethesda, MD for our appointment.  Both girls had x-rays, and Erin had many other tests.  Taylor's issues were what we suspected and can hopefully be resolved within the next few days.  Erin was/is on the verge of pneumonia.  They put her on two new antibiotics and have been calling to check on her daily.
• On Wednesday, after feeling pretty miserable all day, Jade and I were diagnosed with Influenza A.  Fun!  I can't remember the last time I had a fever of 102 or the last time I've felt that bad.  Jade has been miserable as well.  Hopefully it will resolve quickly.  We were able to go on Tamiflu, because we caught it right away.

Honestly, our lives are never dull, but we are so thankful for all that we have.  We are absolutely grateful to the Make-A-Wish foundation for granting Erin's wish to go to Disney World.  Despite the craziness, she had an amazing time, and the smiles we saw kept us warm each day!

The girls cannot wait for Christmas, and we have been counting down to that as well.  We are not quite done decorating yet, as we have been dealing with sick kids daily, but it will get done tomorrow (along with baking Christmas cookies).  We hope you all have a wonderful holiday season, no matter what or how you celebrate.  Surround yourselves with those you love, and remember the blessing you have been given.

Oh yes, once again we have been invaded by illness.  The day after Thanksgiving, Jade woke up with a really stuffy nose, and I was pretty certain it was going to turn into something.  By Saturday she was coughing and had a fever.  On Sunday Jade sounded terrible, so I took her to our local urgent care clinic.  It was determined that she had bronchitis, and she was promptly placed on antibiotics.  She looked and felt horrible for the next two days, and all she wanted to do was snuggle.  During this time, I kept asking Erin how she was feeling, because we knew what was coming.  She woke up on Tuesday morning sounding extremely hoarse, but she said she felt fine.  I felt uneasy all day, knowing she was heading down "that" path again, but she kept insisting that she felt fine.  However, as soon as we got home from school on Tuesday, I could see that she didn't feel well, and she finally admitted it to me as I watched her temperature climb.  At the same time, Taylor was complaining about a sore throat and an ear ache.  Jade was doing a little better, but her lungs still didn't sound good.  Thankfully Kevin was able to get home from work a little early, so he took care of Jade while I took Erin and Taylor to urgent care.  It's so funny (in an alarming sort of way) to see the expression on doctors' faces when they hear Erin's medical history and then listen to her lungs.  I don't think that doctor could put Erin on antibiotics fast enough that night for her satisfaction.  Erin didn't have pneumonia at that point, but she did hear whistling, and with the way Erin was acting, I knew we were in for a long night of no sleep.  Taylor's strep test came back negative, but the doctor did send a prescription home for us if she continued to get worse.  I can't tell you how thankful I am that some doctors are willing to do that!  It saves us a trip with sick kiddos.

Anyway, Erin did have an awful night, and by about 3:45 a.m. she was constantly coughing and couldn't breath through her nose at all.  She was miserable, and there wasn't much we could do to help her.  Her temperature went up to 102.7, which isn't even close to her highest, but still not a fun temperature to have.  When I listened to her breath, I could hear the tell-tale sounds of pneumonia, with popping and crackling in her lungs.  Grrrrr!!  Seriously, this is ridiculous!  However, I do have to say that, since we caught this so early, this bout with pneumonia isn't nearly as bad as our last few.  Yes, Erin is pretty miserable, coughing all the time.  Yes, she does sound like she's breathing underwater, especially at night.  BUT, she is still eating (a little) and drinking (a little), and sometimes that can make all the difference.  We are doing nebulizer treatments every 4 hours, manual chest PT, cough assist machine, and have a humidifier going in her room.  Her ability to cough is much better than it used to be, and this is actually her third time with pneumonia where she doesn't have to be hospitalized.  Yay for small victories!!  SOLOMON stays by Erin's side, and he's very alert at night when she sounds so terrible breathing.  He's such an amazing dog, and we're truly blessed to have him for her companion.

Erin and Taylor have both been home for the past two days, while Jade returned to school.  She still doesn't sound great, but she says she feels much better, and at least we have one child in school at all times!   Taylor started coughing yesterday, so we may just get the prescription filled after all.

Oh, and the reason Erin didn't want to tell us that she wasn't feeling well?  Her trip from Make-A-Wish is quickly approaching, and she didn't want it to be canceled.  Awwww, poor thing.  I told her it was much better that she got sick now and not on the trip.  The girls are SOOOOOOO excited to go to Florida!!!  Oh, some of you have been asking about it, so here are a few details.  We actually will get to go to all of the parks, including Universal Studios.  I know I said Disney World before, but this wish trip encompasses all of the theme parks.   Hopefully they are all doing better before we leave. 

I know I still haven't told you the story about our Rachel Ray Show taping, but it may have to wait once again.  We still haven't heard when it will air, but I will be sure to post it here.  It was an extremely quick, stressful, but exciting trip to New York.  The telling of it will probably take as long as the trip actually lasted!  Ha!  Anyway, we encountered some wonderful people along the way, and the girls couldn't believe how nice some people can be.  I'll try to tell you soon.

One last thing.  The Washington Post Magazine ran a very short article on Sunday about the girls.  It was posted online along with some great photos.  You can see them all here.  It's just an update story, but it packs a lot of info in a small amount of space.  We want to thank Kris Coronado for all of the time she put into writing a much longer story only to have it cut down to this.  You did a wonderful job!  And we want to thank Carol Guzy for once again taking amazing photos of our children.  She was the photographer who took all of the photos of our girls before, during and after separation surgery.  I'm sure she has thousands upon thousands of shots of our family.  Thank you ladies!

O.k., now I have to go take care of two of our sick beauties.  Thank you for taking the time to check on us!

I am so glad that there is actually a day set aside for us to give thanks for all of our blessings in life.  Not that I don't appreciate them every other day of the year, but I don't often have an excuse to sit and reflect on the many, many things I have to be thankful for.  My life is absolutely filled to the brim with blessings, starting with my family.  My husband, who is my rock and was my support system through the most difficult days of our lives, has helped me to stay focused on exactly what is important.  He works harder than anyone I know, and he still makes time for us on the weekends, even insisting that he and I sneak away when we can for a little grown-up time together.   I am also thankful for K.J., who has enriched my life far more than he will ever realize.  He definitely helps to balance out all of the little girl stuff we have going on in this house!  It's been amazing to watch him grow and mature into the wonderful guy he is today.  We're so proud of him for everything he is doing and for working so hard in college to get great grades. 

Of course, as you already know, I count my blessings each and every day for our three little girls, who are like rays of sunshine.  No matter what they go through, they never lose the smiles on their faces or their indomitable spirits.  They have taught me more about life and love during their short lives than I learned in all the years before God entrusted them to me.  I am thankful for each moment I have with them, knowing how easily it could have gone the other way, even with Taylor.  Each day is a gift, and I try not to ever take it for granted. 

I am so very thankful for Kevin's family and mine.  They have been there and supported us through everything.  I am thankful for good friends who continue to be there through thick and thin.  I am so very thankful to work with amazing people and to have a job that I love.  I am thankful for all of the many other things in my life, large and small, that are too numerous to count. 

I know many of you have been checking back to see if I've done any updates.  I have to apologize again, as it seems this fall has completely gotten away from me.  I have been working a lot of full days to make up for the days I missed when Erin had pneumonia.  We were invited to be on the Rachel Ray Show, so we took the train to New York a couple of weeks ago to participate in the taping of that.  I will let you know when it will air, but so far we haven't heard the date yet.  Right after that, we went to Baltimore for a week of physical therapy at Kennedy Krieger for Erin, and that brings us to this week.  I will try to update with details on all of our adventures soon, but on this day, I just wanted to let you know what I am thankful for.  I hope and pray that all of you take time today to reflect on what you are thankful for.  Have a joyful Thanksgiving (here in the U.S.) and a wonderful day to everyone else!