Noah's 4th Surgery

Originally posted January 28, 2008

Two weeks ago Noah went back to the hospital to have his big cast taken off, the pin removed from his leg, and a new cast put on. Everything went well with this surgery and Noah got a smaller walking cast on his leg. It was a short procedure, and he came home the same day. He was a little upset that his new cast wasn't a cool color like his last one, but then he found out it glows in the dark, and he was happy with that. Although it was a walking cast he had a difficult time at first learning to walk on it. I didn't think he'd ever get used to walking on it, and he'd have to keep using the wheelchair the whole time it was on. A week later though he went back to school, and after a couple of days he finally started walking around on it just fine.

Everyone in Noah's class signed his cast.

Another look.

Heading to the hospital.

Playing with some blocks while waiting for surgery.

Noah and Daddy before surgery

Playing with Superman while waiting for surgery.

Waiting for him to wake up in recovery after surgery.

His new cast.

Noah's 3rd Surgery

Originally posted December 28, 2007

Noah had his second surgery on his leg the week before Christmas (his 3rd surgery altogether though). This surgery was to lengthen his heel cord. Since his right leg is shorter than his left he walks around on his tip toes alot around the house which has caused his heel cord to tighten up so that he cannot bend his foot upward towards his knee very well, so they lengthened the heel cord and then put a pin in it to hold it into place. The surgery went well, and Noah was a handful for the nurses when he woke up in recovery. He kept pulling out his IV, and they finally had to wrap his arm up in gauze so that he could not get to his IV to pull it out. He got lots of toys while he was in the hospital, and had many visitors. The Stingrays hockey team visited all the children and played with them in the big playroom. Wendy from Wendy's restuarant brought Frosty's and a little toy for all the kids, a big poodle came by and visited the children in their rooms, and the Marines dropped by with a wagon full of toys. Noah got a big talking Lightning McQueen car.

Anna and I were not able to go with Noah for this surgery because he had to spend the night, and there wasn't room for all of us to stay there. He talked to me on the phone however after he was out of recovery, and the first thing he said to me was, "Mommy, I'm in the hospital, but I don't have a baby in my belly." I almost died laughing. He still remembers Mommy going to the hospital "to get the baby out of my belly" and associates that with going to the hospital. Anna and I went to visit him later that evening along with Grammy and got to play with him in the big playroom for a little while. We also had our friend's 15 year old son, Anthony, with us that week as well. Noah adores him and thinks of him like a big brother, so it really helped to cheer him up that week while he was recovering from his surgery. It also helped us alot too having another set of hands around to help out since Noah couldn't get around very well.

The next day they put a red cast on Noah all the way up to his mid thigh. He picked out the color. I guess he wanted it to be a Christmas cast. They gave him a wheelchair and a walker to get around with, and he was able to come home late that afternoon. He was so excited to be home finally, and surprisingly he really liked his wheelchair and walker and could get around really well using either one of them. He has to wear the cast for four weeks, then he goes back for another surgery to remove the pin they put in his leg and to have his current cast replaced with a walking cast.

Picking out a toy before surgery. He got a plush Mater and Ramone that talk.

Waiting in the wagon to be wheeled of to surgery.

Posing with Daddy and Anthony before surgery. Noah was so out of it in this picture though. The medicine was kicking in.

Waking up in recovery after surgery.

Playing games in the huge playroom at the hospital with one of the Stingray hockey players.

Eating his first meal after surgery, a peanut butter sandwich, his favorite.

Playing with Thomas the Train in the playroom while Mommy and Anna visit.

Pretending to be Bob the Builder and looking a little worn out.

Saying goodbye to Mommy and Anna for the night.

Talking on the phone to Mommy the next morning.

A view of the playroom.

Painting a Christmas picture for Mommy.

Checking out his new red cast.

A big poodle came to visit all the kids in the hospital.

The Marines brought toys for all the kids in the hospital.

Showing off his new Lightning McQueen car he got from the Marines.

Heading home finally.

After going almost five days without a bath, and Noah loves his baths, Daddy looked up on the internet how to give someone a bath while wearing a cast and found out it was possible for Noah to still take a bath with his cast just by using a simple trash bag and propping his leg up in the tub. His leg doesn't get wet at all, and it's completely sealed off by the trash bag. Noah was so excited.

So happy to finally be able to take a bath again.

Feeling good after his first bath since his surgery.

Noah's 2nd Surgery-1st on His Leg

Originally posted June 28, 2007

Noah's surgery on his ankles went great on Tuesday. He handled it so well. We were very proud of him. We got to MUSC in Charleston at 9am that morning and got checked in for his outpatient surgery. We waited around in the waiting room for quite awhile, and poor Noah was getting hungry and thirsty since he was not allowed anything to eat or drink after midnight. They finally called him back, and Daddy went with him while I sat out in the waiting area with baby sister Anna. Noah played in the play area back there, and gave all the nurses check ups with the play doctors kit they had, but did not want to let the nurses do anything to him. He would not even let them get him undressed and into a gown. They gave him some medicine to drink though that would help relax him and make him forget most of what happened. It took some time, but Daddy finally coaxed him into drinking it. It didn't make him forget anything though. He remembers just about everything except the surgery which he was asleep for. They put him in a little wagon and wheeled him off to surgery, and Daddy came back out to the waiting area with me and Anna. The surgery did not take long at all, maybe about 30 or 40 minutes. Once they got him to sleep and could do some good x-rays, the doctor decided he only needed surgery on his right ankle. He put a plate and screws in that ankle to keep his foot from turning outward and hopefully eventually he will no longer need the brace on that leg thanks to this procedure. Daddy went back to see him in recovery, and he was quite grumpy and groggy when he woke up. The first thing he noticed after waking up was an I.V. in his arm, so he started yelling, "What's that in my arm? Get it out! I want it out!" He then tried to pull it out himself, so Daddy and the nurse had to hold him down and keep him from yanking it out. Then he noticed his foot felt funny, so he lifted it up to look at it and saw it all bandaged up, and started yelling again, "What's wrong with my foot? What's on it? Get it off!" He cried and whined a little bit after that and said his belly hurt, but once we got him out of there and into the car headed home he drifted off to sleep and slept the whole way home. By the time we got home and Daddy carried him into the house and laid him on the sofa to rest he had woken up and was pretty much back to his normal self. He was happy and fine and acted like nothing had happened. He never once complained about his ankle hurting him, and in no time he was hopping around the house to get where he wanted to go. I can't believe how well he did with this.

Surgery Day

Playing at MUSC before surgery

Still playing

Getting ready for surgery

See you soon

Headed home after surgery

Finally home and relaxing on the sofa

See my foot all bandaged up?

It doesn't hurt at all Mommy

Nothing gets him down

Day After Surgery

Decided he finally wanted to wear his hospital gown the day after surgery

Two Days After Surgery

I don't want you to take off my bandage

No, don't take it off!!!

Yay, no more big bandage!

What a brave boy!

As you can see we took his bandage off today. He has never once complained about being in any pain. He didn't want us to touch his bandage though. He was afraid taking it off was going to hurt. He screamed and cried and fought us for awhile, but we finally got it off, and then all was fine. We put a little Star Wars bandaid over his stitches and gave him a cookie, and off he went hopping around the house again. In no time at all he was starting to put weight on it, and by the end of the day he was even running around the house at times. Nothing gets him down. He's already asking to go play putt putt golf and to go to Magiquest tomorrow. He's such a tough little guy.

The Beginning

I guess I should start from the beginning, over eight years ago.  Everything was going fine with my first pregnancy until I hit 31 weeks and my water broke.  It was a Saturday, and I was whisked away in an ambulance (my first and only ambulance ride) to another hospital 2 hours away from where we live.  That was the nearest hospital with a NICU.  I was put on bed rest there and was expected to stay there on bed rest for the next six weeks.  I only lasted a few days though.  They discovered I also had placenta previa, and by Monday evening I started bleeding out (I think they said the placenta had started to rupture).  They monitored me through the night very closely, and the baby's heart rate kept dropping, so they did an emergency c-section Tuesday evening to get him out.  He was very tiny, only 3 lbs, and was born on March 19th 2002 (he was due May 19th).  We named him Noah Arron.  It was not at all how I expected it to go.  It was so scary going through a c-section and having a premature baby as well.  Right after he was born they knew something was wrong with his leg.  At first they thought maybe his leg had broken in utero, and then had set on it's own but in a weird way.  It was later discovered that he had fibular hemimelia.  He had a curve in the tibia bone and a slight curve in the femur also.  He was also missing most of his fibula bone.  As if all that we had been through was not frightening enough we now had this to face.  Something we knew nothing about and had never even heard of.  We started researching it on the internet which is always a bad idea because everyone is different and most of the things we read about on the internet were severe cases, so it of course scared us even more.  Noah spent 6 weeks in the NICU after he was born and went through all kinds of testing while he was there.  He had MRI's, CAT scans, a spinal tap, and other tests done because they continued to think there were more things wrong with him.  There wasn't, other than his leg there was nothing wrong with him.  Thank the Lord!  It was definitely a difficult time in our lives.  After finally coming home from the hospital he then had to go right back again for hernia surgery.  That was only the beginning of all the surgeries he had and still has to face.  At about 6 months old he was fitted with his first AFO (Ankle-Foot Orthosis) for his leg.  From then on I continually had people tell me he had lost a shoe when they saw the brace on one leg.  He was about 17 months old when he finally started walking.  Being premature had put him behind developmentally so he went through physical therapy as a baby as well.  I can't remember when he started that, but I think it was somewhere between 3 and 6 months, and I believe he continued with it until he was around a year old.  He saw an orthopedic specialist every few months at the hospital he was born at and continues to do so.  Many children with this are often missing toes and a lot of times the only course of action is to amputate.  Noah had all of his toes and a very optimistic doctor that thought he could help Noah, so limb lengthening was what was discussed from the very beginning for him.  The problems with his leg would cause his right leg to be shorter than the left, and as he grew so would the length discrepancy.  For the first 5 years of his life his appointments with the specialist were just for x-rays, and for him to keep an eye on how Noah's leg was growing.  At 5 years of age he had his first surgery on his leg.   He is now 8 and a half years old and has had 7 surgeries on his leg.  In 2008 he had his first limb lengthening surgery.  The one we had heard about for years from his specialist and were dreading.  I remember praying all the time when he was first born that his leg would just grow normally and keep up with the other leg, and that the curve in the bones would grow out, so that he wouldn't have to go through all of this especially the limb lengthening.  It was very difficult, but we all got through it, and Noah did so much better than anyone expected.

My next posts on here will be about each one of Noah's surgeries.  They will be copied though from my other blog about our family so each post will be from the time when each surgery actually occurred.  So keep that in mind when reading them.  They are journal entries from the past.  I'll try to remember to put the date from when I actually made the post so that it isn't too confusing.


 Here are a few pictures of Noah's early years.

3 days old under the blue light in the NICU.

Finally getting to hold him for the first time - 5 days old.  Look how tiny he looks in my arms.

Getting his feeding through his feeding tube - 6 days old.

Laying in his little bed in the NICU - 13 days old.

Almost a month old.

Finally home at almost 2 months old.  Still on oxygen and a heart rate monitor.

You can see the difference in his legs pretty good in this picture - 4 months old.

A little glimpse of his AFO on his leg - the day after his 1st birthday.

20 months

Walking around the pumpkin patch with his AFO on - 2 and a half years old.

I'm not sure about his age here because the date is messed up on the picture, but I think he's right around 3.  You can see the lift that he started wearing on his shoe here.  The size of the lift kept increasing over the years each time he needed new shoes.  It got up to about a 2 and a half inch lift before his limb lengthening.