The Buckles Family

Happy Holidays to everyone!  We hope you are all doing well and enjoying life.  Our family had a wonderful time celebrating Christmas yesterday.  We have to thank Children's Hospital and all of the amazing people who donated toys to that special place.  Because of all of you, our children were able to experience the excitement of seeing many gifts underneath the tree.  It was an extra special day for us because this was the first Christmas that our immediate family was all together.  Two years ago I was in the hospital, and last year Kevin Jr. was with his mom.  This year was also wonderful because we were able to celebrate the day with Kevin's sister and her family. 

Today a few of us are a little "under the weather".  I have a cold, which is no big deal, but we think that Taylor has another bladder infection.  Tomorrow we will take her to the doctor to see if that is the case. 

Once again, we hope you are all healthy, safe and happy.  No matter what is going on in our lives, we take time each day to celebrate the fact that we have four miracles here with us.  We have been blessed beyond measure.

Well, over the past week it has snowed twice here, so we spent those days playing outside.  All of the girls love the snow and were excited for their first sled ride down the hill in our backyard.  We made snow angels and a snowgirl.  Erin likes to ride around in the sled, while Jade insists on walking everywhere.  Taylor is just happy to be outside, but she would much rather play with the older kids (brother and cousins) than her sisters.  Of course, if we're all she has, then she's happy and satisfied!  :0)

This week is extremely busy for us as we have two appointments at the National Naval Medical Center and one at Children's.  I'll definitely have my hands full.

Oh, Taylor woke up this morning and asked if it was Christmas.  Can you tell that she's excited?

Here are a few pictures of the girls in the snow.

First, I would like to wish my Dad a very happy birthday!!  He has been a constant support and an inspiration in my life, and I love him with all my heart!  I would also like to wish my mother-in-law, Jean Jean, and my sister-in-law, Grace, a happy birthday.  They both celebrated their big days in the past week.  They are both extremely important and special people in our lives.  Happy birthday to you all!

O.k., so here are a few funny stories from our trip to New York: 

When we first got to the train station to leave for New York, we found out that the tickets had been booked for October instead of November.  We thought we had it worked out until we got on the train and discovered we had only two tickets instead of six.  Needless to say that Emily, the woman from Children's Hospital who was traveling with us, got it all worked out quickly. 

When we arrived at ABC studios on Thanksgiving morning, we had to walk through the set of Good Morning America to get to the green room.  They were on the air (live), so they told us to be absolutely silent.  As soon as they opened to door to let us walk through, Jade began crying very loudly.  It was one of those moments that you are just frozen in place for a split second trying to decide what to do!  Kevin stayed back until he got her calmed down before following the rest of us.  That is why we posted the picture of Jade next to the sign telling people to be quiet!

I had my hair and make-up done by the people at the studios, and they put a little make-up on Taylor.  After they put lipstick on her, she stuck her lips out and wouldn't let them return to normal.  I was so afraid that she would keep them like that for the interview with Mr. Gibson.  It was like she didn't want to mess the lipstick up.  Luckily, she forgot about it once we got on the set, and instead of making that funny face, she just looked tired (which she was).  She didn't say much when he asked her questions.

During the Macy's parade, Taylor had a running commentary of everything that was coming down the street.  She was a completely different girl!  Mr. Gibson just sat and laughed at her, thinking she was pretty cute!  Of course she is!

Erin watched the entire parade while Jade took a nap in the stroller. 

All in all, we had a wonderful time!  We have some great memories of our Thanksgiving trip to New York City!

I will be adding new pictures of our trip to New York to our Photos page, so you'll have to check them out. 

I do want to talk about Taylor's latest MRI, which she had done right before Thanksgiving.  It seems that, while her cord was untethered during surgery, it may be tethered again already.  There are no tests to tell us if this is the case; we will need to keep a close eye on her to watch for any symptoms.  She will see the neurosurgeon every three months, and she will undergo MRI's every six months.  Of course, if we do begin to see symptoms of her cord being retethered, Taylor will have to have surgery again.  This is frightening because each surgery is even more risky than the last.  However, if she doesn't receive surgery for a tethered cord, then Taylor will eventually lose all function from the waist down.  Hopefully we will never see evidence of her cord being tethered again.  There is a slim possibility that she could go the rest of her life without any more trouble with her spinal cord.  It has now become a waiting game for us, although we do our best not to focus on it any more than we have to.  We are hyper-sensitive to any issues Taylor is having with her legs, back or bladder function, but we are still trying to distinguish between typical growing pains as opposed to pain stemming from her spinal cord.  

Erin had a renal ultrasound (on her bladder and kidneys) yesterday.  Everything seems to be o.k.  There were a few things they will keep an eye on, but nothing to be concerned about right now.  Taylor will have to have the same procedure done in a few weeks.

Everyone else is doing well.  Jade is Miss Independent, wanting to do everything by herself.  It gets a little difficult in the grocery store when she announces, "I WANT TO WALK!"  Kevin Jr. is excited for the holiday break.  He has been working out, getting in shape for basketball try-outs, which are right after they go back in January.  I really hope he makes the team this year! 

We hope everyone had a wonderful Thanksgiving!  Ours was hectic but a lot of fun!  We traveled to New York City by train on Wednesday, which all of the kids (and adults) loved.  It's so much nicer than traveling by plane, because there is more room to move around.  Anyway, on Thursday morning our family had the opportunity to appear on Good Morning America.  We were interviewed by Charles Gibson, who has done all of the coverage of Jade and Erin's story for ABC.  Taylor just loves him, so she was excited.  For those of you who did not see the piece, it was mostly about Taylor and the surgery she underwent this past summer for a tumor on her spinal cord.  She was very tired Thanksgiving morning, so she was not her usual animated self while we were on the air.  After the show, while we were watching the Macy's parade, she came alive.  We had a perfect viewing area from inside ABC studios, so we could not have had a better time.  It was exciting to see all of those giant balloons coming right towards us -- Taylor's favorite was, of course, Scooby-doo!!  We ended up having to eat at an Italian restuarant, so we didn't get the traditional Thanksgiving dinner that day; however, I spent yesterday cooking, and we had our feast last night. 

All in all, we had a wonderful time!!  I will post pictures of our trip very soon and write more about our exciting adventures! 

First, today is the Marine Corps' Birthday, so we would like to wish all the Marines out there a very happy birthday!

We have been quite busy over that past few weeks.  We celebrated Taylor's fourth birthday!  It's still so difficult to believe that she is already 4 years old.  We had a small party for her, and she had a wonderful time.  We also had a lot of fun on Halloween, with everyone dressed up.  We took all the kids out trick or treating, and even Jade and Erin mastered saying "Trick or treat".  It was extremely cute! 

Taylor has been sick since right after her birthday.  She has some sort of virus that is causing a high fever.  We thought she had it beat when the fever went away after the first four days, but now it is back.  She's seen the doctor twice, but they can't find anything bacterial to treat.  We're just treating the fever and trying to keep her comfortable.  Luckily it hasn't been passed to anyone else in the house.  Hopefully her body will get the upper hand soon.

We took Erin in for her regular RSV shot the other day.  She is now 17 lbs 10 oz.  To put that into perspective for some of you, there was another set of twins in there who were 6 months old (they are actually considered to be 3 months old because they were 3 months premature), and those twins each weighed 16 lbs.  Remember, Jade and Erin are now 20 months old.  They're little, but they sure are adorable.  People are always so surprised to see Jade walking because she is so small.  

Kevin Jr. finally got the cast off of his arm.  He had fractured a bone in his elbow, but being a kid, he healed quickly.  What a relief, since basketball season is quickly approaching! 

I will include a few pictures from Taylor's birthday party and one from Halloween.  Oh, we also wanted to let you know that our family is tentatively scheduled to appear on Good Morning America on Thanksgiving morning.  I say tentatively because we've learned that things like this can change at the very last minute.  We'll let you know if anything changes, but so far we're still set to go.  We hope everyone has a great day.  Semper Fidelis

Erin and Taylor received their new equipment, and both girls are quite happy.  Taylor had a new brace made for her foot, and our hope is that it will help correct the position it has grown into.  Erin now has a brace for her abdomen.  This is to attempt to stop her spine from curving.  Since she has no control of her muscles from mid-chest on down, she slouches when she sits.  The brace will keep her from slouching, but she is not very comfortable in it.  We will have to slowly build her tolerance.  Erin also had a crawling frame created for her.  It is to help her crawl at a much faster pace than she can do on her own.  She is able to keep up with her sisters a little bit better than before.  When she wants to get in it, Erin says, "walk".  She is doing quite well with it, although she has learned to get out of it on her own, so we are constantly having to put her back in.  It has turned into quite the game, and she knows which family members will participate more readily than others! 

Here are some recent pictures of the girls.  This is Erin's new crawling frame and abdominal brace, Jade's first ice cream cone, and Taylor modeling her pajamas.  

Erin was seen by a pediatric Nephrologist this past week.  He is a doctor who specializes in the kidneys.  Because of being prone to UTI's, Erin is also at a higher risk for kidney damage.  She will be returning to the nephrologist every 6 months to make sure there are no infections or damage that we are unaware of.  The difficult thing about it is that Erin won't feel any abdominal pain or most of the other symptoms.  Some of the other clues that we could pick up on are quite subtle.  She definitely keeps us on our toes!!

Our family from New Orleans traveled back there this weekend to assess the damage to their house.  It is much worse than they ever expected.  They are attempting to salvage what they can before they come back up here.  In speaking to my brother-in-law tonight, he sounded so beaten down and exhausted.  I wish there was more we could do!  They should be back here early in the week to try to pick up the pieces and move on.

Well, I finally have some more pictures to post.  I'll just put a few on the site.  Jade and Erin couldn't wait to put on their butterfly Halloween costumes -- there will be more from their trick-or-treating experience.  And Taylor just loves to pose!

Another round of antibiotics has taken care of Erin's third urinary tract infection.  I'm coming to accept the fact that this is something we'll have to deal with her entire life, although I'm hoping we'll be able to get some sort of handle on it.  She will be seeing a pediatric nephrologist (kidney specialist) this week.  I think we'll be working on some preventative measures, in the hopes that we can avoid any kidney damage in the future.  Erin is doing very well, though.  She is slowly gaining weight, although I'm not sure if they'll ever make it onto the doctor's growth chart.  They have created their own curve, which seems to be o.k. with everyone as long as they are eating and gaining weight.  Both Jade and Erin will probably be small for their age for quite awhile. 

We have many appointments coming up.  I'm not sure why, but they seem to go in spurts.  We won't have any for a few weeks, and then we'll have a number of them right in a row.  Of course, all of them require a long drive, but the girls seem to be used to it.  We're also working on trying to find a physical therapist to provide home-based care for Erin and Taylor.  Unfortunately, our therapist is no longer able to provide services, and with winter and RSV season right around the corner, we don't want to take the girls out too often.  Erin is very susceptible to any and all respiratory illnesses, because her spinal cord injury has caused decreased lung function.  Last winter we were very lucky that she didn't even get a cold, and we definitely can't let down our guard now.   Anyway, it's been quite difficult to find a physical therapist who can come to our home.  We're still working on it.

Each day our girls just steal our hearts.  They are all so beautiful and have the most amazing smiles!  One look from them just melts away our worries and cares.  Children are such a blessing!

Kevin Jr. is doing well, although he fractured his elbow a week ago.  He is in a cast for at least a month, which will put him right into the time he needs to start practicing for basketball season.  Thankfully it's his left arm, so he can still shoot! :0)

Our family members from New Orleans are all doing well.  Our 3 nephews are doing exceptionally well in school, and we are so proud of them.  They are still going through so much, but they haven't allowed it to affect their grades.  Kevin's mom, sister and brother-in-law are doing the best they can with what they have.  They all have great attitudes, but it is definitely not easy.  They are hoping to go to New Orleans for a visit sometime soon to see if they can salvage anything from their home.  Kevin's mom is actually planning on moving back down there as soon as she can, because her apartment didn't sustain much damage.  Of course, they still struggle with the fact that they arrived here with nothing.  They speak to friends and loved ones daily, all of whom are wondering what they will do now.  For all of the hurricane survivors, the future is a great big question mark.  We just hope we can make a small difference in the lives of the survivors we know and love.

Taylor and Erin were seen last week in what is called the Spina Bifida clinic.  It is a clinic for all types of spinal cord issues.  It is a wonderful concept:  all of the doctors come to you.  We stay in the same room, and the neurologist, urologist, orthopedist and physiatrist all come to us.  It makes for a REALLY long day, but it's much easier than trying to make separate appointments with all of the specialties.  It was recommended that Taylor should get a new brace for her right foot, and Erin will be receiving many pieces of new equipment.  That day was the first time the doctors admitted to seeing some voluntary movement in Erin's legs.  Up until now they have told us we were just seeing reflexes, but they now say some of the movement is Erin's doing.  We were so excited to finally hear what we knew in our hearts.  It's a great sign, but it doesn't mean she will fully recover; however, any recovery is better than none at all!  It means there are more things she will be able to do in her life.

We went today to have Taylor and Erin fitted for their new braces/equipment.  It was another long day, but all of the girls were extremely well behaved.  Erin's body had to be casted so they can fit her with an abdominal brace, and she was very calm and quiet.  I was so proud of her.  I'm quite sure that Jade would not have been able to lie still for so long!  Taylor did a great job getting fitted for her brace as well.

Anyway, I need to get back to my busy household.  Our thoughts and prayers are going out to all of those in the path of this new hurricane, Rita.  Take care!

Things are starting to settle down here again, and everyone is trying to get back into a routine.  Our 3 nephews started school here last week, and they seem to like it so far.  We are just so happy to have them all here with us.  We have Kevin's mother, his sister and her husband, and their three boys.  They are still not sure what they are going to do -- right now they are just trying to get back on their feet.  New Orleans' school systems are closed for the entire year, so even if/when they can get back into the city, they won't have anything to go back to.  We're trying to help them cope as best as we can. 

Jade and Erin had their 18 month well-baby check last week.  They are doing so well, even though they are extremely small for their age.  Jade weighs 18 lbs 5 oz and Erin weighs 17 lbs 5 oz.  They are 29 1/2 and 29 inches long respectively.  They love to sing songs, their favorites being Baa Baa Black Sheep, Row Row Row your Boat, and the ABC's.  They can also count to 10.  They are so funny!!  Erin likes to hold hands and sing at the dinner table.  They're too cute!

Kevin Jr. started school this past week as well.  He's enjoying being in the top grade at his school.  He loves having his cousins here to hang out with, so it seems there are many blessings in disguise from this hurricane.

Taylor is still having bladder issues, but we continue to hope that they will resolve themselves over time.  We'll just have to wait and see.  Other than that, she is doing wonderfully well. 

Our house now has a few more people in it, but we are just so thankful to have Kevin's family here with us.  They were all extremely lucky to get out of New Orleans with their lives, if nothing else.  They still don't know if they have anything to go back to, but for now they have us and what we can provide for them.  We will be enrolling our nephews in school tomorrow and hopefully getting some aid for their family.  We are just happy that we can help in a small way.  There are so many stories on the news that just break our hearts, and we wish we could do more for others who are affected by the hurricane.  Our brother-in-law, Brian's, father was found last night.  He had been missing since the hurricane hit, because he was not able to leave New Orleans.  They had been going to the Astrodome several times each day before coming up here to search for him.  He was found and is now doing well.  He had to spend a few days on the roof of his house before being rescued.  Thank goodness he is safe and sound... so many others weren't so lucky.

Everyone is doing well.  We are blessed in countless ways!

Things continue to stay busy in the Buckles household.  All of the kids are constantly on the go, usually in different directions.  Erin is the one who needs the most help with things, but she's also the one who has decided she no longer wants it!  When she is sitting on a chair or on the steps, we need to hold on to her because she still loses her balance once in awhile; however, she now pushes our hands away, wanting to sit on her own.  If things happened through sheer force of will, Erin would be walking and running around by now.  She is extremely determined!

Jade is also doing very well.  She is strong-willed and stubborn, but she can also be the sweetest little girl on the planet!  She wants to do everything Taylor does, and she hasn't yet realized that she is much smaller than her older sister.  We have started potty training (slowly), and while she loves to sit on the potty for 2 or 3 seconds, it is still more of a game to her.  Erin is actually doing better than Jade in that department, even though we still are not sure if she has control of her bladder.  Erin likes to sit on the big "potty", and she has actually gone potty twice after telling us she had to go.  It may or may not be a coincidence... only time will tell.

Taylor is still recovering.  She had an appointment with her neurosurgeon last week, and he is very happy with the progress she has made so far.  She still has some lingering issues that may or may not resolve themselves, but for the most part she is doing fantastic!  She is thrilled to finally be able to swim in her little pool again and to swing on the swings.  The only thing she is truly banned from doing is jumping on a trampoline.  I think we can live with that! :0)

Well, set your VCRs (or TIVOs) for Thursday morning.  Our family is scheduled to be on Good Morning America again.  It airs on the east coast from 7-9 a.m. on ABC.  I'm not sure what time we will be on the show, but if we find out ahead of time, I will post it in an update.

Our thoughts and prayers go out to those of you affected by the hurricane.  We hope everyone comes out of it safe and sound.  Kevin has family in Louisiana, and thankfully they all made it out in time.  We just hope they have something to go back to!  Please take care and stay safe!

Our last two weeks have gone very well.  Erin had some testing done on her kidneys and bladder, and they both turned out better than expected.  The doctors were worried that she would have scarring on her kidneys from the two urinary tract infections she has had, but those fears were unfounded.  Erin's kidneys look perfect so far.  We will have to be extra vigilant from here on out, but so far so good.  Her bladder function is also much better than we had originally thought.  She may actually have some control; we'll just have to see as she gets older.  It will be a relief when she can tell us what she can feel or do on her own.  Erin's arm and upper body strength is amazing to us.  She can pull herself almost anywhere she wants to go, although the stairs have not been mastered yet.  We are working on it daily, but it will still be quite awhile before she can pull herself up, and going down will be a great challenge as well.  If you ever wonder what it is like for her, just get down on your stomach and try to pull yourself forward only using your arms, with your legs trailing along behind you.  It is quite difficult, and it has definitely opened my eyes even more to her daily struggles.  However, through it all, her beautiful smile shines forth!  While she does get frustrated once in awhile, she is usually quite happy and makes our hearts melt. 

Taylor continues to improve.  She is mentally ready to go back to all of her favorite activities, but we have to hold her back a little still because her strength hasn't completely returned.  We want to thank those of you who wrote to us with suggestions on things to do while she was on bed rest, and we especially want to thank the very special people who sent Taylor videos or activities.  We greatly appreciate the kind thoughts and deeds!

Jade and Kevin Jr. are both doing extremely well.  Kevin Jr. has been going to camp and playing basketball this summer, and Jade is on the go from the moment she wakes up until we put her in the crib at night.  She runs everywhere, and is very funny!  All of the kids have smiles that could light up the world, and we are just so thankful to have them in our lives!  We are also very thankful to have Kevin's mom staying with us right now.  She is so helpful and is doing a great deal to make our lives much easier.  I just can't thank her enough for all that she does!

Jade and Erin had an appointment yesterday with the pediatrician to check on the ear infection and UTI (respectively).  He said they're looking good, although we'll have to wait for the results on Erin's test.  Jade now weighs 17 lbs 6 oz, and Erin weighs 16 lbs 13 oz.  They're such cute little things; people always think that they're about 9 months old!    Everyone is doing well again, and it seems we're all feeling much better. 

Oh, I added a few more pictures to the photos page.  There are many special people in our lives, so I thought I would show just a few.

Our family had a rough week, but it seems we're all recovering well.  Jade's fever peaked at 104.5, and Kevin ended up taking her to the emergency room in the middle of the night on Thursday.  She was crying so hard, and nothing we did could console her.  Earlier in the evening we had decided to take her to the doctor the next day, because we suspected she had an ear infection, but the crying prompted an immediate trip.  It turned out that she does have an ear infection, so now all three of the girls are on antibiotics.  Kevin also wound up with a high fever on Thursday and Friday.  The only one who didn't get sick was Kevin Jr.  Lucky kid!  Anyway, we're all on the mend and in better spirits. 

Taylor is doing much better with her back.  She is slowly regaining her strength and her spunky spirit.  It's getting more difficult to keep her from running around like she usually does.  We constantly have to remind her that she still needs help with many things.  She will need to continue with physical therapy for quite awhile, and she will need to wear a brace on her right foot indefinitely.  It's such a relief to us that she has the ability to walk at all, so the fact that she will have to wear a brace is not a big deal. 

Thanks again for all of the prayers and words of encouragement!

I just wanted to post a quick update about the girls.  We got a call from the E.R. doc today who said that Erin does have a urinary tract infection.  Bad news!  This is her second one in her 17 months of being alive.  She has some tests coming up to check her kidneys to make sure there is no damage or scarring.  She must have had a virus on top of the U.T.I. though, because her fever has come down today, and she is not on antibiotics yet.  Of course, Jade spiked a high fever in the middle of the night last night, so I'm sure she has the same thing.  I can't get the fever to go away, and I've given her Motrin and Tylenol.  It comes down for a short period of time, but never disappears.  Hopefully she gets rid of it fast, or we'll be making a few more trips to the doctor. 

Taylor is steadily improving.  Each day she is a little bit stronger and in less pain.  She has a few appointments coming up to check on her bladder function and also the swelling around her spinal cord.  We're very optimistic about her recovery.

Well, Erin did not have to be admitted to the hospital.  They ran tests on her urine and blood and couldn't find out what was wrong.  When she arrived at the hospital, her temperature was 103.8, and that was after we had given her motrine before she left the house, but they were able to get it down fairly quickly.  The docs said she must have some sort of virus, so we'll just have to wait it out.  I must have gotten the same thing, because I was down and out for the entire day today.  It's a great thing that Kevin was able to stay home to take care of all of us!!  Hopefully we'll recover quickly.

Thank you to those who have sent ideas to help keep Taylor busy.  We really appreciate any and all suggestions!  Also, thank you to Kimberley and Wes for making the trip down to see us.  It means more than you know!

I'm sorry I haven't updated the site in so long.  We took a trip to visit my family before Taylor's surgery, and I didn't have any time to sit down at the computer.  We had a great time, although we weren't able to see everyone we had hoped to see.  Jade and Erin had a tough time, because they were out of their environment, but Taylor couldn't have been happier.  She did so many things, but a few of the highlights are as follows:  she caught many frogs (all of which she named "Froggy"), she went fishing, she got to ride a horse and a pony, she played with puppies, she went on a boat ride, she swam in a lake, and of course she was able to play with many cousins and new friends.  We attended the family reunion for my dad's side of the family, and we all had a wonderful time (except for the many mosquito bites!). 

We are now preparing for the surgery on Taylor's spinal cord.  The neurosurgeon will remove as much of the tumor as he can while untethering her cord.  The surgery is coming up very soon.  I will post an update about the results as soon as we are home from the hospital.  We thank everyone for their kind thoughts and prayers.

Here are some pictures from our trip. 

We had a very special birthday in our family this week:  Kevin's birthday!  I would like to wish him a wonderfully happy birthday, as he deserves only good things in his life.  He is an amazing man who would do anything for his family.  I am so blessed to have him in my life, and I love him more than I ever thought possible.  Happy Birthday, sweety!

Everyone else is doing well.  Jade and Erin are growing and learning new things daily.  Taylor is aware she is having surgery, but she doesn't quite understand the implications of it, which is a good thing.  She does have some pain in her legs once in awhile, which is just a symptom of her condition.  I'm glad the surgery is happening soon, as the symptoms will continue to get worse as time goes by.  Kevin Jr. has made some friends in the neighborhood and now spends a lot of time playing basketball in our driveway.  Life is good.

Please take care, and have a wonderful week.

Today is a very important and special day for two reasons:

1.  It is the one year anniversary of Jade and Erin's separation surgery.  They have been leading separate lives for an entire year... Amazing!  HAPPY ANNIVERSARY GIRLS!!!!!!!

2.  It is Father's Day.  I want to take this opportunity to wish my husband a Happy Father's Day.  He is an absolutely wonderful husband and father, and I couldn't be more thankful to have him in my life!  He has given me so much love, support and encouragement, and he is always there when we need him. 

I also want to wish my dad a Happy Father's Day!  I couldn't ask for better!  Thank you for everything you've done for me and my family, Dad!

Happy Father's Day to all the fathers out there!

 Dear Family and Friends,

           Kevin and I would like to take this opportunity to share something that is happening with our daughter, Taylor.  I’ll give you a little background before telling you the most recent information.  When Taylor was born, her right foot was noticeably smaller than her left.  She also had a small dimple in her skin at the base of her spine.  The pediatrician just looked at both of those things and said it was no big deal.  As Taylor grew and began walking, she would always curl the toes on her right foot, and she tripped more than other children her age.  Each time I brought it up to the pediatrician she would say that it was nothing to worry about.   The doctor said that her foot may catch up to her left or she may just have one foot smaller than the other her entire life; however, she never gave any indication that she thought there could be an underlying issue causing the foot to be smaller.  As Taylor got bigger, her entire right leg from the knee down didn’t grow at the same rate as her left; it was much smaller.  Her right foot began pronating and the toes started to turn out at that point as well.  Of course, this happened at the same time we found out we were having conjoined twins, so while we were very concerned about Taylor, we didn’t have the opportunity to take her to the doctor until this winter.  We went through a few specialists before ending up back at Children’s Hospital.  The orthopedic surgeon there suggested that she thought Taylor may either have a mild form of Cerebral Palsy or something called Spina Bifida Occulta.  The doctor didn’t really think she had the latter, so she ordered an MRI to rule it out completely.  We went in last Friday for Taylor’s MRI, and we were pretty much prepared to hear that she had either one thing or the other.  After the MRI was completed, the doctor looked at the results immediately.  She asked us to come down to her clinic, without the kids.  At that point, we didn’t know what to think.  As soon as we got into the room, the doctor began explaining about the spine.  She showed us pictures and a model.  So of course, at that moment, I was thinking Taylor must have Spina Bifida Occulta.  What the doctor said next rocked me to the core.  She told us that Taylor has a benign tumor called a spinal cord lipoma.  It has attached itself to her spinal cord and is causing what’s called tethering.  The tumor has stretched her spinal cord to much longer than it’s supposed to be, which is why she is having problems with her leg.  Kevin and I were in complete shock as the doctor told us that Taylor will need surgery to remove the tumor, but that they usually cannot get all of it since it is attached to the spinal cord.  She said there is a possibility that the tethering will reoccur as she grows, which would mean more surgeries down the road.  We felt shell-shocked as we left the hospital that day, facing the fact that another one of our children will have to undergo a dangerous surgery.  On Tuesday of this week we met with the neurosurgeon who will perform the surgery.  He explained to us in great detail the cause of the tumor as well as the ramifications of it.  We have just hit the tip of the iceberg as far as the manifestations of a tethered spinal cord.  Taylor has displayed some minor symptoms, but thankfully she isn’t worse yet.  If we did not do the surgery, Taylor would continue to get worse, eventually losing bowel and bladder control and her ability to walk.  Of course, any time you operate on the spinal cord, there is a possibility of damage to the cord, but if we do nothing at all, severe damage to Taylor is inevitable.  She is scheduled to undergo surgery in mid-July.  She’ll be in the hospital for approximately 4-5 days barring any complications, and then she’ll be home with restricted activity for another couple weeks before she’s cleared to play as usual.  Taylor will need to receive physical therapy.  There is a chance that the surgery itself will cause Taylor to lose function in the lower half of her body, which she may or may not recover from.  She’ll be followed very closely for many, many years to come, as 1/3 of all cases will have retethering of the spinal cord at some point.

            I feel like a boxer who keeps getting knocked down, and every time I start to recover and get back up, I get hit again.  We’ve decided we need to start playing the lottery, though, since our children have ended up with rare conditions.  Conjoined twins happen once in every 200,000 live births, and apparently a spinal cord lipoma happens once in every 100,000.  It’s been difficult not to ask “why us?”, but Kevin just says “why not us?”  We’ve been deemed worthy to raise these beautiful, miraculous children, therefore we’ll be given the strength to overcome any and all obstacles.  It’s still difficult to deal with, and I’m frightened for Taylor, but as a family we’ll make it through this.

            We just wanted to let you know what has been going on with us, since we’ve been keeping you updated on our family.  We know many people have been praying for Erin and Jade for quite some time, so maybe you could add Taylor to that list.  We truly appreciate all of the kind words and support we have received in the last 2 years.  Thank you all for caring about our family.

 Our love,

The Buckles Family

I don't have time to write much, but I wanted to share some new pictures.  Erin received her Ready Racer, and she absolutely loves it!  She is able to be where her sisters are without us carrying her from place to place.  Jade actually enjoys pushing her around in it, so it works out well.  We are extremely happy with this piece of equipment.  Erin will eventually learn to wheel herself around in it, but her arms are still a little too short for that right now. 

Thank you all for your patience in waiting for our updates.  I didn't realize how long it had been since the last one until a few people said something to me.  Time seems to get away from us somehow!

We're all doing well.  Jade is now trying to run instead of walk!  She's so impatient!  Hmmmmmm...  I wonder where she got that!  :0)  Anyway, she no longer receives physical therapy, which is a huge step for her.  Yeah!  She loves to help us with everything, whether it's picking up toys, closing doors, sweeping the floors, and she even holds Erin's bottle for her when she's drinking.  They're very cute together!  Jade also pats Erin's head when she's lying next to her.  Erin likes to tickle Jade and holds her hand when they ride in the stroller.

Erin is learning how to pull herself along using her arms, but it's pretty difficult.  She has also learned how to transition from a sitting position to lying on her stomach, and she can also push herself back up to sit with her legs in a "W" position.  She is so determined to do things, but now she gets especially frustrated when she can't.  We are working on getting her a mobility unit so she can move around with her sisters and brother.  It's not quite a wheelchair, as she is still too little for one, but it will allow her to learn to roll around in a sitting position.  Erin is doing very well with physical therapy, although she only has it one time per week now.  Her original therapist had knee surgery, so we have a new therapist who the girls already love.  It seems everyone gets involved with therapy, even though it's for Erin.  Taylor and Jade are right there with her as she works.

I will include some recent pictures of the girls so you can see how big they're getting.  They just had their 15 month check-up.  Erin now weighs 15 lbs 15.5 oz, and Jade weighs 16 lbs 9 oz.  They're still little to most people, but compared the 4 1/2 lbs they each weighed when they were born, they're big to us.  Anyway, in the pics, Jade is wearing pink and Erin is in purple.

And here's Taylor with her new umbrella.  I'm not sure if it was raining that day or not! :0)

We want to take this opportunity to clear up something that many people have asked us about.  Apparently, some people are/were under the impression that we have received money for the specials that have aired about Jade and Erin.  Our family has in no way received any money from ABC or Discovery Health for the programs they put together.  We have not "sold" their story to make a profit.  The only reason we allowed these programs to be made was to help other families who may go through a similar situation.  We did not have anyone to talk to while we went through it, but we would have liked to be able to discuss many of the questions or issues we encountered with someone who had been there.  Thankfully, we have been able to help 3 different families already, and that has made it all worthwhile.

I thought life might be a bit easier when Erin and Jade became more independent; however, I didn't factor in that they would have completely different personalities and would want to do different things at the same time, or they want exactly the same thing at the same time.  I'm not sure which is worse!    Of course, we love every minute of it!!  Kevin and I are both exhausted at the end of each day, but we couldn't be more thankful for the days that we have. 

Jade and Erin now have their ears pierced.  We decided to do it on Saturday, and the girls look so cute!  We had Jade go first, and, of course, she let the entire mall know that she wasn't too thrilled.  When everyone turned to look at Erin, she began crying too.  They both did very well, though.  Hopefully people won't call them boys anymore.

Everything with Taylor is going well.  We have her MRI scheduled for June, so we should know more after that.  Every day she wants to go swimming in her little pool (that's my girl), and she's very excited about taking lessons this summer.  She's going to be a Guppy, but she pronounces it Gubby -- not sure why.  She also wants to take gymnastics, so we'll have to see what we can do.

Kevin Jr. is doing very well.  His grades are excellent, and of course he is excited about summer vacation.  We're hoping to get him into a basketball camp, as he loves to play.  He's a great kid and a wonderful big brother.

Life doesn't slow down around here, but we wouldn't have it any other way.  We want you to know that we absolutely enjoy hearing from all of you.  Thank you for the kind words in our guest book and thank you for the e-mails. 

Well, in just a few weeks, Jade has decided that walking is much more fun than crawling!  She's so cute as she walks all over the house, especially since she is still so small.  You wouldn't expect to see a baby her size being able to walk.  We're very proud of her!  She is doing extremely well.  She has also decided that "mama" is her favorite word, and she yells it at the top of her lungs whenever she can.  It's pretty funny!

Erin is still doing well with her standing frame.  She has learned to turn herself around while she stands in her exersaucer.  We were very surprised the first time we saw her do it, but her upper body is quite strong, and it's something we've been working toward.  We have also started to put her on the kitchen floor, or other slippery surfaces, to help her learn how to pull herself forward using just her arms.  She very much wants to be able to get around by herself.  We're extremely proud of her as well!  Of course, we're proud of all of our children and their accomplishments; it should go without saying.

Taylor has been to see a few specialists about her leg/foot, and is scheduled to see more.  She will also need to have an MRI on her spine.  As soon as I learned she would have to be sedated for the procedure, my heart sank.  Not again.  Oh well, if it helps to figure out what is wrong, then it's something we need to do. 

Anyway, I am finally going to add new pictures to our site.  By tonight I should have some up on our photos page at the bottom. 

We have wonderful news:  Jade is now walking all by herself!!!!  She took a few steps for her daddy yesterday morning, and then in the afternoon she began to walk across the room.  It was like something just clicked!  She still crawls most places because right now it's faster, but I'm sure she'll be running around very soon!  Oh no!   Now I'll really have my hands full every day!

Everyone else is doing well.  We've been stuck indoors because of the weather change, but hopefully it will be nice again soon.  Taylor has an appointment with a specialist this week to check out her leg/foot.  I hope we get some good news. 

I only have time for a quick update, because Taylor wants to go outside to swim in her little pool.  We're all doing well here;  keeping busy, as always.  The weather has been absolutely beautiful over the past few days, so we're definitely enjoying that.

Taylor had an appointment on Monday with an orthopedic for some issues she's having with her right leg and foot.  He referred her to another specialist.  Hopefully it can be corrected with a brace, but he did mention she may need to have surgery.  That was about the last thing I wanted to hear!  We'll just have to wait and see.

Apparently the special on Erin and Jade aired again last night on Discovery Health.  One of my friends had told us the other day, but we didn't get a chance to watch.  It may sound silly that we would want to watch it again, but I think we could all watch it over and over and not get tired of it.  Even though we "lived" the story, it's amazing to watch our journey.  We're thankful to everyone else who watches and takes an interest in our family.  We truly appreciate all of the support and prayers!

Have a wonderful day!!

Things, as always, are busy around here.  The weather has been beautiful, so the girls and I have been spending a lot of time outside.  We had a picnic (or "picmic" as Taylor calls it) yesterday.  Everyone was just so excited to be eating in our backyard, it was actually difficult to get them to eat!  We had a lot of fun.

Everyone is doing well.  Taylor and Jade have finally gotten over their virus, and thankfully, Erin never got it.  The girls haven't had physical therapy for 3 weeks, because the therapist was traveling, and now she is having knee surgery, so we'll have to explore our options.  Erin definitely needs therapy, and Jade may not need it for much longer.  She still isn't walking, but she is ever so close.  She took 2 steps for daddy the other day, but otherwise she is content either crawling or cruising around the furniture.  She is very good at standing on her own.  Erin is still enjoying her standing frame and can now be in it for 15 minutes at a time.  However, in some ways I think she just sees other things she can't do, as she sometimes gets very frustrated when she wants to do something with her sisters but can't.  We also have to be very careful when holding Erin, because if she sees something she wants, she throws her upper body towards it.  If you're not holding her tightly, she would throw herself out of your arms.  And, of course, both Jade and Erin want to be held and carried at the same time, so I'm really getting a workout each day!  Who needs to go to the gym?! :0)

Anyway, we're on our way to visit daddy at work today.  We hope everyone has a wonderful day!

I'm sorry I haven't updated in awhile.  Things have been quite busy around here.  Erin now has her standing frame, and she absolutely loves it!  She can stand up next to her sisters and play with toys using both hands.  She doesn't have to hold on to anything in order to keep her balance.  She can only be in it for 10 minutes at a time a few times per day, because her body needs to get used to the new position.  We're just so thrilled that she has this opportunity. 

Jade still isn't walking on her own, although she is extremely close.  She stands by herself for long periods of time, but she won't take a step forward.  If we urge her to walk to us, she just lowers herself to the ground and crawls!  It will be soon. 

Both Jade and Erin are eating "real" food now and are quite excited about it.  I often can't get the food on their trays fast enough before they eat it all.  I usually don't get to eat my own food until it's cold! :0)  While they were very picky with their choices of babyfood, they are slightly less so with real food.  However, they definitely let us know what they do and do not like.  They are both talking much more and can say quite a few words.  They surprise us sometimes with what they say!  It's so much fun to listen to them.

Taylor and Jade have both been sick, so that's part of the reason I've had my hands full.  We just hope Erin doesn't get it, because this virus causes coughing and congestion along with a high fever.  Her lung function is compromised because of her spinal cord injury, so she is not able to cough.  We are always very concerned about this issue and are ever vigilant about washing our hands.  So far we have been very lucky.  Maybe where she lacks in lung function her body compensates with a stronger immune system.  So far Kevin Jr. hasn't picked up the virus either.  That's a great thing, because he is a huge help with the girls.  They all adore him.  Jade and Erin have learned to say "K.J.", which really makes him smile.

Last Thursday I took the girls in for their One Year Well-Baby check-ups.  Jade now weighs 15 lbs 5 oz, and Erin weighs 14 lbs 2 oz.  We will have to adjust how we view Erin's growth curve, because as a paraplegic, her body will not develop and grow like her sister's.  It's the little things like that that really bring it home for me.  Anyway, earlier that day, Erin developed a fever.  The doctors didn't seem too concerned at her check-up, but as she continued to spike fevers that night and the next morning, we grew very concerned.  Because of her spinal cord injury, Erin doesn't have control of her bladder, therefore she is more at risk for urinary tract/bladder infections.  After spending 6 hours in the ER on Friday, the diagnosis of UTI was confirmed.  We were sent home with antibiotics.  Erin is now doing better, although she is still not quite back to her sunny self.   We are just thankful we caught it early.

Jade and Erin are now learning new words and having fun yelling them quite loudly.  Our house is never quiet now except for a few peaceful moments (and I do mean moments) at night!  Looking at them and listening to them make so much noise just makes me feel so blessed.  Life is so fragile, and we've been given an amazing gift to have all of our children alive and healthy.  As I watched, and cried my way through, Primetime Live tonight, I realized yet again what an absolute miracle we've experienced.  The show was about the Tsunami, and just listening to the parents talk about being unable to save their children, I was reminded over and over again never to complain about things such as Erin's condition or even the lack of sleep from getting up with our babies in the night.    We just celebrated the first birthday of our two precious girls who, statistics say, shouldn't have even made it to birth.  In our family, we absolutely believe in miracles -- we live with two of them!

We went in yesterday to have Erin measured for her standing frame and leg braces.  She will be able to stand (assisted) in 2 1/2 weeks!!!  We are so thrilled and excited for her!  I have to admit that it was difficult to see the "contraption" she will be strapped into, but I quickly realized that it was the first step in helping her to be able to "walk" someday.  I used to work at a camp for people with physical disabilities, so I've seen all of the different types of wheelchairs, walkers, braces, etc, but it is quite different when you see them on your own child.  However, I know this will get easier, emotionally, as time passes, and we will be strong together as a family for Erin.

Kevin and I allowed the media to cover the story of our girls for one main reason, and that is to help other families who may be going through the same or similar situations.  We searched for someone to talk to about our concerns of having conjoined twins.  We had many questions about how to care for them once they were born.  We want to be there for others, and we want to help support them during the often difficult times during pregnancy and after the babies are born.  We know what it is like to go through that, and while we wish no one else would have to endure it, we know it will happen.  We want people to know that they should feel free to contact us with any questions or concerns if they are faced with this situation.  Also, there is an online support group for families and friends of conjoined twins.  I have created a link on our Links page.  Please feel free to visit the site to see what it is all about.  We are in the process of creating a group exclusively for families of conjoined twins, and I will let you know when it is up and running.  I just want to thank everyone who has supported us during the difficult times.

Jade and Erin's birthday was absolutely wonderful, and we all had a lot of fun!  We had a party at our house, and we are extremely thankful to those who were able to come.  We also want to thank everyone who sent cards, e-mails and posted messages in the guest book wishing our girls a happy birthday.  It means so much that you all remembered and were thinking about them on that very special day.  You will all have an opportunity to see Erin and Jade at their birthday party, because ABC Primetime Live is doing an update show this Thursday, March 3.  They will air a 6-7 minute piece on our girls sometime during the hour showing them on their first birthday.   It seems that ABC will continue to follow them as they grow, airing updates every now and then.

We finally have an appointment tomorrow to get Erin measured for her standing frame.  We are so excited to put her in a standing position, and we know she will definitely enjoy it as well.  I can tell she really wants to follow Jade as she crawls across the floor or when she walks along pushing a toy.  I wish there was more we could do for her right now -- I just feel so helpless when Erin becomes frustrated at not being able to do what she wants to do.  I will continue to research our options, because we will do absolutely anything we can in order to help our children have a better life.

One year ago today at 10:31 a.m. our beautiful baby girls were born!  After months of worry, fear, and much planning on the part of the doctors, Jade Hope and Erin Faith decided to make a very quick entrance into the world.  In the minute that it took for them to be born, our hopes and prayers were answered.   Our little miracles came out breathing on their own, despite the fact that they shared a diaphragm.  We have been down a long and difficult road with them in this one short year, but it is also one that has brought us much joy. 

Happy 1st Birthday Erin and Jade!!!!!!

Well, Discovery Health channel is airing a special on Jade and Erin tonight.  It is on at 9 p.m. Eastern time.  This show may be similar to the ABC Primetime piece, but it will also contain more clinical and surgical shots.  The show is called:  "Conjoined Twins - Erin and Jade".  Pretty original!   If you are not able to see it tonight, I know that Discovery Health re-airs shows every so often.

We are getting ready for Erin and Jade's birthday on Saturday.  It is absolutely unbelievable that they are a year old already! 

Yesterday Jade and Erin had their RSV shots -- only one more to go this year!  They were weighed, as usual, and both girls continue to gain.  Jade now weighs 14 lbs 9 oz, and Erin is 14 lbs even.  They are nowhere near other kids their age as far as weight, but they are creating their own growth curve.  They are doing well.  We are still working on trying to order the standing frame for Erin.  We're having a few communication problems with the doctors, but hopefully that will be worked out by tomorrow.  The physical therapist was hoping to have her in it by their birthday, but that most likely will not happen.  Meanwhile, Jade is getting closer and closer to walking on her own.  She walks around pushing this little ride-on/walk-behind toy through the house like a pro, all by herself!  It's so cute, because she's so little!  She always has this huge grin on her face as she does it, and you can tell she's very proud of herself.  Both girls are eating finger foods, drinking from straw cups, and love to play pat-a-cake.  Today I told Erin to say "uh-oh" and she repeated it right back.  Too cute!!!

I can't believe my babies will be a year old next week!  What a year it has been!  They have been through more in this past year than most people will endure in a lifetime.  They are so brave!  We are absolutely blessed to have Erin and Jade in our lives.  We would like to thank everyone who  played a part in getting them here, as well as those who have worked to keep them here.  We could never thank you enough!

The physical therapist did assessments on Jade and Erin last week, and they are both at the twelve month stage!!  What an accomplishment!  Erin, obviously, cannot complete the physical requirements such as crawling, pulling up or walking, but she is there cognitively.  Jade is doing well in every aspect.  These girls started out so far behind, because, not only were they born 6 weeks early, but they were conjoined for the first four months of their lives.  They were not able to do any of the things other babies their age were doing at the time.  Their view of the world was completely different, as they faced each other all the time.  They continue to amaze us with their courage, strength and abilities.

We spent the afternoon at the hospital today.  Erin had another x-ray to recheck her broken bone, and it looks pretty good.  She had her fiberglass cast removed, and she is now in a tiny little aircast.  Yeah, now it's much easier to give her a bath.  She will be in the aircast for 10 days.  The doctors are now working on getting her the standing frame, so we can help her to stand up and put weight on her legs.  That will help to strengthen her bones.  We were also given the order to take the girls out into the sunshine to help their bodies produce vitamin D.  Maybe we'll win a trip to a tropical place to make that part easier!   Anyway, it seems that we're almost back on track again.

Well, another busy week here.  The girls had appointments at Children's on Tuesday with the cardiologist, plastic surgeon, and the main surgeons.  These appointments were just check-ups to make sure everything is looking o.k.  Both Jade and Erin received great reports from all, excluding, of course, Erin's spinal cord issues.  They will both be checked next week for low calcium levels and bone density.  We're extremely happy about the news from the cardiologist, because there was always a fear that Erin's heart wouldn't function normally after having to fold the tip down into her chest.  It seems it is perfect!  He only wants to see us back in a year -- that says a lot.

My parents came into town this week to help us out for awhile.  I think it's been too much excitement for the little ones, because they haven't been sleeping very well the last few nights.  I hope it settles down soon -- it's tough on mommy and daddy, as we run into their room when one wakes up so she doesn't wake the other.

We went to our little friend Jackson's birthday party today.  He will turn one on Feb. 3.  He is Erin and Jade's NICU buddy.  It's amazing how well they are all doing!  It was really special to see them all together again.  I can't believe our girls will turn one soon too!

Another special thing that happened was that all the girls received a gift from their aunt DeeDee (my sister).  She knit them all hats and scarves, and they are just beautiful.  Here is a picture.  Thanks sis!

We had a great weekend.  It snowed here, although not as much as was predicted.  Kevin Jr. had a friend over, so the boys, Taylor and I went outside to play.  Daddy made the sacrifice to stay inside with Jade and Erin!  Taylor can't get enough of the outdoors, which is a great thing!  I guess she takes after her mommy.  Jade got her second tooth on Friday, but Erin still doesn't have any.  They continue to show us just how different they are from each other!  Jade pulls herself up on anything she can get her hands on, and she's starting to cruise around her crib and the coffee table.  Erin is getting much stronger in her upper body, and she's still able to roll over, even with her splint.  We're going to move forward with getting the standing frame, because by the time it is ready, Erin will be ready for it as well.  We will find out within the next few days how well her leg is healing and how much longer she will be in the splint. 

It's difficult to believe Erin and Jade will be 11 months old on Wednesday.  Strangely, this year has gone by quickly!  We're so thankful for each and every day we have with our children!!!

The girls slept through the night for the first time in a few days.  I guess the splint on Erin's foot made a difference.  I find myself handling her now like she's extremely fragile (which she is).  It's Taylor we really need to watch.  She doesn't realize that Erin is different in any way, so she jumps and plays around her like she does Jade.  Taylor knows that Erin has a "booboo", as she calls it, but that still doesn't prevent her from playing like she usually does.  We'll work on it.  Here are some pictures of the girls today.  Jade seems to be a future pianist!

Well, we were back at the hospital today.  The physical therapist was just as concerned as we were about Erin's leg.  We went back in to have it x-rayed, and she actually has a fracture in her lower tibia directly above her ankle.  The radiologist said that her bones look "washed out", meaning less dense.  The way that we keep our bones strong and healthy is by bearing weight on them (ie. standing, walking, even crawling).  Since Erin is not able to do that, her bones are much weaker than they should be.  We have no idea what caused the fracture, but we were told it could have been just about anything.  We are definitely going to have to be much more careful with her at all times.  We also need to start her on calcium supplements to try to increase her bone density.  We were working on getting a standing frame for her in the near future, one of the reasons being so that she could bear weight into her legs.  That will be pushed back about a month now, but we will get her into it as soon as possible.  Poor little Erin truly didn't need one more thing like this to deal with.  We keep waiting for calmer waters, but for now it seems we are still caught in the storm.

I spent the afternoon with Erin at Children's Hospital today.  I noticed yesterday that her leg was swollen, and we became concerned.  This morning the swelling hadn't gone down, so after talking with her pediatrician and one of her surgeons, it was decided that we should take her to the ER.  There is the possibility that the swelling could be caused by a blood clot, so she needed to be seen.  After a very long afternoon and an ultrasound on both of her legs, a large blood clot was ruled out.  They could not perform the ultrasound on her lower legs because the vessels are too small, therefore there is a possibility that she has a small clot below her knee somewhere.  We were sent home with the instructions to keep a close eye on it and to come back in a week if nothing changes.  Of course we are still concerned.  Because of her spinal cord injury, she does not have sensation below mid-chest level.  If there is something serious going on, there is no way for her to let us know, as she feels no pain.  Hopefully this will resolve itself very quickly -- we don't need anything else to worry about!

Last week we had the opportunity to spend the afternoon with some very good friends.  Jessica and Jackson Light came to visit us while they're in town.  Jessica and I were in the hospital together last year while we were both pregnant.  We were "long-termers".  She, very sadly, lost one of her twins but was able to carry Jackson to 27 weeks.  He was born on February 3, 2004, weighing in at just 2 lbs.  He is now 22 lbs and much bigger than both Erin and Jade.  It was so much fun to see our children playing together after the heartache and hardships we both endured together.  Life is full of miracles!  I'm including some pictures of Jackson and Jade playing together.

Jade and Erin continue to make progress in their development.  Jade is now pulling herself up on everything she can.  She is very proud of herself!  She also loves to hold our hands so she can "walk" around the house, although she often tries to run.  The physical therapist is determined to have her walking by her first birthday!  Amazing!  Erin works very hard, as she seems to want to do what Jade does.  It's heartbreaking but also inspiring.  We will be working with the doctors in the very near future in order to get Erin into what's called a standing frame.  It is in this way that she will be able to be upright in a standing position to see the world as her sister does.  She will also need braces for her legs, hips and torso eventually, as well as a special stroller that has better support.  It's a bit daunting, but we will do everything possible to give her the very best life we can. 

The kids constantly bring us so much joy.  We are absolutely blessed! 

We made it back from New York safely and are now trying to recover.  It was a quick trip, but it was a lot of fun.  We felt like stars for the day.  We would like to thank Charlie Gibson and ABC for making us feel so welcome and for treating us so well.  Erin and Jade's story is so very important to us, and we hope it can help other families out there if they ever find themselves in our position.  We once again send our love and support out to the Gundacker family, who had two beautiful little girls named Grace and Hope.  They were conjoined at birth and were separated in July.  They fought a long and difficult battle to survive, and their strength and courage was amazing, as well as that of the family.  Heartwrenchingly, Grace and Hope both passed away in December.  We will always remember them and will hold them in our hearts forever.  It is with great honor that we dedicate our Primetime show in loving memory to Grace and Hope.  We will add a link from our site to theirs so you can read their story.

The kids did very well on our trip.  It was our first time on the train, so that was pretty exciting.  We had the opportunity to meet Fantasia (from American Idol), and I have to say that we were all extremely impressed with her.  Not only is she an amazing singer, but she is a wonderful and very down to earth person as well.  She was thrilled to meet the girls, because she had watched their story the night before.  She asked if SHE could take a picture with US!!  That was a switch!   We also met Kelly Rippa and her husband, and of course the entire Good Morning America staff.  It was a lot of fun!  I'll add the pictures to the site as well.

We just want to thank everyone who watched the program on Thursday night, and GMA on Friday morning.  Thank you for all of your support and encouragement.  We will never be able to express our gratitude. 

 Erin and Jade had an appointment today to receive their RSV shots.  They are always weighed first in order to figure out the dosage.  Erin now weighs 13 lbs 7 oz, and Jade weighs 13 lbs 12 oz.  To most people that may seem pretty little, but to us it seems as if they are getting so big!   It's been amazing to see them grow and develop.  I took so much for granted when Taylor was a baby, but now we know what a miracle life really is.

Always remember to celebrate the little things!

Happy New Year!!  We hope everyone had a wonderful and safe New Years celebration.  Ours was very quiet -- well, as quiet as it can be with a 12 year old boy and three little girls!  We enjoyed every minute of it.  Erin and Jade are at the stage where they babble all the time;  they love to talk/yell at the top of their voices.  Of course, Taylor feels the need to join in, which makes her sisters giggle in delight.  Kevin Jr. loves to play with all three of his sisters, and they love him dearly.

We have some big milestones to report.  Erin can now roll over from her stomach to her back!  She figured out a way to do it even though she has very little movement from the chest down.  Every time we see her accomplish this task we beam with pride!  Of course, Jade couldn't let her sister have all of the limelight, so she decided she would crawl on hands and knees, pull herself up on furniture (or people), and get her first tooth all in one week!  We have a lot to celebrate!

ABC Primetime Live will be airing the Special they've put together about Jade and Erin.  It is scheduled for Thursday, January 6th.  Then, on Friday, Jan. 7th our family will be on Good Morning America (also on ABC). 

Happy Holidays!  As we woke up this morning, we thought about the events of the past year.  One year ago today, I was in the hospital worrying about the survival of our unborn conjoined twins while Kevin was at home playing super-dad, trying to be everything to everyone.  It has been a difficult year, but one that was extremely rewarding as well.  Looking back, it seems to have gone by quite quickly, although I'm sure I didn't think so while I was in the moment.  We are blessed today to have 2 very beautiful, courageous and strong-willed little girls who have bright futures in front of them.  We want to thank everyone who played a part in getting them here, as well as those who did so much to ensure a very successful separation surgery and recovery.  Kevin Jr. and Taylor are heroes in their own right and deserve a great deal of credit for helping us through the year, as we couldn't have done it without them.  We still have a long road ahead, especially with Erin, but we know that as a family we can make it through anything.

We had the opportunity over the course of this past year to meet and become friends with a wonderful family, who, like us, had a set of conjoined twins.  They were two beautiful little girls, whose names were Grace and Hope.  They were born just four days before Jade and Erin were separated, and they went through their own separation surgery on July 12th.  They fought a courageous battle to survive, but their little bodies just weren't strong enough.  We are heartbroken to tell you that Grace and Hope both passed away recently.  Our thoughts are with their family, especially during this holiday season.

Erin and Jade continue to do well.  They have now moved up to eating Cheerios!  We get excited about the little things! :0)  The physical therapist works wonders with them both, and she hopes to get Jade walking and Erin into a standing frame before they turn one.