Friday, January 13, 2012

Noah News

In December Noah got a new AFO (brace) and new shoes with his lift on them. What an ordeal getting his brace was though. At the beginning of the year we had started a new insurance, and of course the place where we usually got his brace made was out of network with our new insurance. So as we started looking for a new place we came to find out everyone around was out of network with our insurance, and it isn't like we have some uncommon insurance provider or anything. It's a pretty popular one, but we couldn't find anywhere that was considered in network that made AFO's for children so that we didn't have to pay full price for his new brace which would be at least $1000. Well, I won't get into the whole story of all that we went through to get his new brace, but eventually our insurance was able to find us a place that wasn't too far away that was in network that could make Noah's new AFO for us. They were fast too. We got it a week later, AND......our insurance covered it 100%(they normally cover 80% I believe). What a blessing that was at Christmas time! I thank God for working it all out so that our bill went from over $1000 to $0.

Posing with his new brace and making sure he gets his face in the picture too, and Anna had to get in on it as well.

New shoes with his lift on them

In other news on Noah, he went to a kidney specialist after having that kidney stone back in November. The tests came back that it was just a calcium stone, which is good. The doctor said it was probably from all the time he has spent immobilized because of his limb lengthening procedures. Being inactive and unable to weight bear on his leg can cause the bone to release excess calcium that the body doesn't know how to process which can then turn into a calcium stone. Over the past year he has had random occurrences of terrible pain and nausea. It started back right after his last limb lengthening surgery (December 2010) so we assumed it was caused by all the pain meds and anesthesia. He has had problems with the pain meds before, but the occurrences of pain kept happening so we started looking for other answers. One of them was that he was lactose intolerant because it did seem like a lot of the time the pain and upset stomach came on after he had had something dairy. We started giving him lactaid whenever he had dairy, and at first it seemed as if these episodes had gone away, but then he had another one, and I eventually started giving him dairy without lactaid and found that it didn't bother him a bit, so it was not that. All this time the extreme pain and nausea and eventually vomiting as well that he kept having randomly was probably caused by that kidney stone moving though his system. In fact, if you remember back in September 2010 I had a special prayer request for Noah because he had had rusty colored urine one day, and they were running a bunch of tests on him then. The tests all came back fine, and they didn't find anything on the kidney ultrasound either, but I did read online that blood in the urine of a child is a key tip off that it could be a kidney stone, so I'm not sure why all the tests came back fine, and I could be wrong about this, but it seems like that is probably when this kidney stone started. I do know though that the kidney stone has been there since at least April. That was when he had some leg pain during his limb lengthening, and he went to the ER, and they took some x-rays of his leg at that time. Well, when he went to the same ER for his kidney stone they were able to look back at those x-rays on his leg and could also see his kidneys in them, and the stone was right there. It's just that at that time no one was looking at his kidneys in the x-ray, they were looking at his leg. Now that we know what this pain is from though if he has it again we'll know to have him checked for kidney stones. He goes back to the specialist next month, and he will do a kidney ultrasound to see if he has any more. We are thinking he might because he has had some random pain again. It's not nearly as bad though and goes away rather quickly, but it still may be the start of another kidney stone.

Thursday, January 5, 2012

It Never Ends for Noah

Originally posted November 27, 2011

Well, last night, just as we were sitting down to enjoy our first Christmas movie of the season, Noah comes to us crying and tells us it has hurt to pee all day, that he can't pee now, and it feels like something is blocking his pee. So off to the ER he went. He was miserable by then, and sure enough it turned out he had a kidney stone, a huge one. In fact, the doctors and nurses said it was the largest one they'd ever seen in anyone, even adults. I think they said 13-14mm. Poor thing, no wonder he was so miserable. Although you never would've known it the rest of the day. (We put up outside Christmas lights that afternoon while he and his sisters ran around and played outside the whole time.) The doctor in the ER sedated him and got it out quickly, and before you knew it he was back to normal, and with the versed they gave him he didn't remember a thing. He felt awesome when he got home and was full of energy even though it was 1 am by then, and he's been fine ever since. The drama and craziness and trips to the hospital just do not end for him even when we're done with procedures on his leg for awhile. He still ends up back in the hospital for something. At least it waited until after Thanksgiving to happen though.

Noah's 11th Surgery-2nd Limb Lengthening Complete

Originally posted July 26, 2011

Just after the 4th of July Noah had the surgery to remove his pins and external fixator from his leg finally. The doctor decided to do what's called nailing, where they put a rod in the center of his bone to help support the bone. Because of this Noah had to spend the night in the hospital which we were not expecting and did not plan for, but it also meant less time on crutches. Luckily we made some great friends this year, Melissa and James, who's little boy also has FH (fibular hemimelia) just like Noah. They live down near the hospital and see the same doctor Noah does, and Melissa went to the hospital and sat with Noah while Arron went to the store to get a few things they needed for their overnight stay. We are so thankful to them. Noah would not have liked being left by himself at the hospital, and I was at home two hours away with the girls because they are too young to visit Noah in the hospital. He came home the next day and did so well. He was up using his crutches and getting around just fine. A week later he went back for a check up and to take the bandage off his leg, and they told him he could start walking on it whenever he wanted. He started off slow, but within a couple days he was walking just like normal, as if he had never had a limb lengthening surgery. We were so glad it was finally all over and he could really start enjoying the rest of his summer and also wearing normal pants again.

Home from the hospital with no pins in his leg.

Showing off his scars after the bandage came off.

Done with crutches after only a week.

Noah Update

Originally posted March 31, 2001

Thought it was about time I did an update on Noah and his leg. We lengthened all the way to about the first week of March. In February and the beginning of March he had to have two quick little procedures to straighten out the bone. When you lengthen the femur it tends to want to bow a little, so it had to be straightened back out each time. He grew about 2 inches of bone in the femur during this process. When we finished the lengthening process in early March he was able to start putting weight on his leg and begin walking again. It was difficult at first, but he's getting around pretty good now. He started going to physical therapy every week to help him with bending and straightening out his leg now that he's starting to walk again, but it should only be for a few weeks. On March 21st just after his birthday he went back to school finally for the first time since Thanksgiving. He was so excited to be back and to see all his friends. He is doing so well, and his doctor continues to be amazed at his progress. He may even get his fixator off of his leg sooner than we thought because his doctor says he heals faster than anyone else he's seen. The new bone was hardening much faster than normal. Can't wait for it to finally be off of his leg and be done with this, and for him to be able to wear pants without holes cut down the side.

What a handsome boy.

He wanted to pose with his Nerf gun.

His leg healing nicely.

A video showing how well he's walking.
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Noah's 10th Surgery-2nd Lengthening

Originally posted December 27, 2010

Well, Noah's on his 10th surgery now, his 8th on his leg, and he makes sure he lets everyone know what number it is. We started his 2nd limb lengthening procedure on Dec. 8th. In some ways it has seemed a little better and a little easier than the first one, but in other ways it has been more difficult also. For one thing he only had to stay one night in the hospital this time instead of two, which was nice. The first few days after he came home when his leg was still all wrapped up he seemed to do a lot better than the last time and be in less pain. He slept well at night those days also. He even did well with getting up and moving around some on his walker. Once he went back to the doctor to have the bandages removed though, it suddenly got harder. Most of the problem though was not actually his leg, it was more his stomach from all the pain meds. The meds made him nauseous, gave him bad stomach aches at times, and constipated him as well. He has done so much better I think with the pin cleanings this time. It's been painful at times for him, but I definitely think he handled it a lot better than last time. Another thing that has made it a little harder on him this time is that while they were doing the surgery to put his external fixator on his leg they also had to go in and take out the screw and plate they put in his knee to correct his knee last December. His knee has been hurting him a lot because of that, and it's taking him a while to be able to bend it again. Sometimes his knee has actually been causing him more pain than his leg with all the pins in it. After they took the bandages off his leg the good full nights of sleep disappeared. He started having a lot of pain in his leg at night when he'd go to sleep, and it would wake him up every couple of hours. We started feeling like we had a newborn in the house again from all the lack of sleep. He is finally starting to sleep a little better though now, thank goodness. We were getting pretty exhausted, so it's nice to finally get a good night's sleep again. He's starting to get up and around pretty good again now, and can use his walker to walk all over the house without any pain. He's doing so well, and we are so proud of how brave he's been through all of this. The hard part should be over now, and it should just get better for him from here on out.

Hugging Anna goodbye before leaving for his surgery.

Trying to hug Gracie, but she was a bit squirmy.

Waiting for surgery.

Resting after surgery.

Painting Anna a picture in the children's playroom.

First time up day after surgery trying to get around a little.

Home from surgery.

Showing us how he can get around a little.

Looking at his get well cards from all the kids in my mom's group.

After the big bandage around his leg came off, showing off his pins and external fixator.

A little closer look.

Almost Christmas and exactly 2 weeks since surgery. Starting to feel better and get around better too.

I also want to mention how wonderful my mom's group has been through all of this. I'm so thankful I found this group. The day after Noah came home from the hospital they each took turns bringing meals over for us each night. They were all so yummy, and it helped so much just being able to warm something up that has already been prepared for us instead of spending so much time making dinner and then cleaning up afterwards. When Arron came home from work instead of making dinner I was able to help him with Noah since it took the both of us to do that and that was when we would give him his bath, clean his pins, and work on getting him moving around. All of the mom's have been such a blessing to us through this time.

Noah's 9th Surgery

Originally posted December 15, 2009

Noah had his 9th surgery today. It was his 7th surgery on his leg, but his 9th surgery all together. He was a brave boy as usual and did so good. He didn't have the breathing problems this time like he did after his last surgery thankfully, so he was able to come right home the same day. Now he is resting and recovering at home. This surgery was similar to the very first surgery he had on his leg. They put a plate and a screw in his knee to slow down the growth on one side so the other side can catch up because right now his leg is starting to turn inward when he stands on it. For his first surgery they did this to his ankle. We have to leave the bandage on it until Saturday, but he can start walking on it gradually whenever he feels comfortable putting weight on it.

Showing me his bandaged up knee right after he got home.

Noah's 8th Surgery

Originally posted July 9, 2009

Just when we thought our poor little boy was finally done with surgeries for a few years, he ended up needing emergency surgery this past Monday. He had been complaining about some pain during 4th of July weekend in his lower abdomen, and Arron checked him and noticed a swollen area. So Monday morning I made an appointment with his pediatrician for that afternoon. As soon as the doctor checked him she noticed the swollen area, and said he had another hernia (his first was at around 2 months), and that it was starting to become discolored. She was very worried about it and wanted it taken care of right away. She got right on the phone and found Noah a surgeon who could do the surgery that day. He went straight to the hospital and had surgery that evening. The surgery went well, and they were able to repair the hernia with no problems, but after surgery he was having difficulty breathing, something he had never experienced after any of his other surgeries. They weren't really sure what caused the breathing problems, but they finally started giving him some breathing treatments which helped him. No one ever really figured out for sure what caused his breathing problems, but they said it could be from built up scar tissue in his airway from all the times he's been intubated for his other surgeries. He spent three days in the hospital this time before he was finally able to come home. He's doing better each day now, and hopefully that will be his last surgery for a while.

Not feeling too good after surgery.

Getting a breathing treatment.

Finally getting some sleep.

Trying to be tough.

Happy to be home with a big bear he got while in the hospital.

Free At Last

Originally posted April 28, 2009

Friday Noah went down to MUSC and finally got his cast off. It's been a long 7 months, but he is so relieved to finally be able to see his leg again and take a real bath. Now he can run and play just like before. It came off just in time for summer too. I know he's looking forward to going to the pool and playing on his waterslide again.

Noah's latest x-ray

His new brace and no cast anymore

He's got batman all over his brace.

Noah's 7th Surgery

Originally posted April 2, 2009

Tuesday Noah had another surgery on his leg. He had the external fixator and pins removed from his leg, so now he just has a small cast on his leg that stops just below his knee. The cast he had on before went just above his knee, which meant he wasn't able to bend his knee, so after this surgery he had to get used to walking again which took him a few days. His leg was stiff and hurt him some from not bending it for so long. Now he just has to wear this new cast for about 4 more weeks, and then he will finally be done with this whole procedure. It's been a long, difficult road since October 1st so after 7 months it will be so nice to finally be done with it. He's not done with surgeries completely though, he's just done with this one, but it will be a couple years before he has another one. For his birthday we got him a bike helmet because we wanted to get him a new bike once the final cast comes off, and hopefully now that the length difference in his two legs isn't that much anymore he'll be able to learn how to ride a bike. We've been dreading this surgery since he was a baby. It's nice to finally be just about done with it.

Below are some of Noah's x-rays of his leg.
This is before his surgery. You can see the length difference in his legs here.

This is about a month into the lengthening I believe. You can see where the bone has been cut and how much it has been spread apart from the lengthening.

This one is at the end of January I think, and you can see the new bone that has grown and filled in that gap you saw in the previous x-ray.

Now here's a couple pictures of Noah on his surgery day.
Playing games while he waits for his surgery.

Home from surgery and showing off his new blue cast.

Noah News

Originally posted January 30, 2009

We went to see Noah's pediatric orthopedic doctor today and were really hoping that he would let us know when he was going to take the cast and fixator off of his leg. We thought it would be sometime soon like the beginning of February, but instead he wants us to come back in 4 weeks for another appointment, and that appointment isn't until March 2nd. So he won't be getting it off in February at all, and since his appointment isn't until March 2nd that means it will still be a little while after that before he gets it off, which is cutting it awfully close to when I'll be having baby #3. The doctor said though that if he takes it off too soon it could risk the bone fracturing if it hasn't hardened enough, and if that happens he'd have to put the whole thing back on again, and we sure don't won't that. So I guess we will wait patiently until Noah's doctor thinks it's alright to remove the fixator and cast and hope that it's before the baby comes.

In other news about Noah, Arron had to go to a meeting at his school the other day. He has been having a hard time this year. His teacher is often letting us know that he's not behaving. He's been talking too much, as usual, and goofing off, and not doing his work in class, and also is not getting along with the other kids in the class. She thought he was struggling in some areas and needed extra help in math and reading comprehension and thought he would benefit from some type of special needs class. Arron and I disagreed. I thought he probably was goofing off and not doing his work because he was bored. That's one thing his teachers in the past have said both years. He gets bored with the work they're doing because once he learns something, he's learned it and wants to move on to something else. And Arron also suggested that his behavior and not getting along with the other kids probably had alot to do with all that he's been through this year. He started 1st grade for a few weeks, then had a very difficult surgery, where he was taken care of and waited on hand and foot because he couldn't walk or do very much for himself and was out of school for over 2 months, and then went back to school and had to get used to his 1st grade class all over again. Going through all of that would be difficult for anyone, especially a 6 year old. Why someone at that school couldn't come up with this revelation though themselves I don't know. It seemed common sense to Arron and I. So anyway, back to what happened at the meeting. Noah's teacher was asked what she thought Noah needed, and she stated what I mentioned above. Well, before they held this meeting someone from the school district came to the school and tested Noah. She gave him several different tests in several different areas to see if his teacher was right. She was also at the meeting and after they heard what the teacher had to say, the lady from the school district went over Noah's test results. Are you ready for this? She said there was nothing wrong with Noah academically. He tested way above average (around 30 points above average) for not only his school but the entire school district on every test she gave him. She said if you give him any extra help academically he will be so far ahead of all the other 1st graders that he shouldn't even be in 1st grade anymore. In fact, she said he could be doing 2nd grade work right now, but he's just not mature enough behavior wise to be in 2nd grade though. Arron said after they went over Noah's test results, the teacher and everyone else that was there from the school for that meeting just sat there pretty much with their eyes big and their mouths open, and Noah's teacher sat there red faced and embarassed the rest of the meeting. Then they finally agreed with what Arron had said all along. The only problem Noah has in school is that his life has been so disrupted this year, and the only thing that they need to work on with Noah is his behavior. Everything he does in school is to get attention because he got used to being the center of attention when he was stuck sitting on the sofa all day long for 2 months while he couldn't walk. They seem to expect him to be just like all the other kids, and to be able to come back to school after two and a half months of being out and jump right back in as if he was never gone, but the other kids have had time to get to know each other and build friendships, and the other kids get to run and jump and climb and play together at recess and p.e. while Noah can't do all those things and has to sit it out and watch the other kids all have fun together. He doesn't get to get his energy out like the other kids because he has metal pins in his leg and a cast that goes up past his knee so he can't even bend his right leg, so I can understand why it's sometimes difficult for him to sit still at a desk in his classroom all day. I don't expect them to give him special treatment though because of all this. I know that won't help him learn the right way to behave at school, but I do think they could be a little more understanding of his situation and all that he's going through. He's 6, and is getting ready to go through his 6th surgery on his leg (his 7th surgery altogether). Most adults couldn't go through all that he has in his short little life and be expected to just be like everyone else and go through the day like nothing ever happened. Why do they expect so much from a 6 year old little boy?

Noah's 6th Surgery-Walking Again

Originally posted November 26, 2008

Last week Noah had another quick surgery just to remove the two pins in his foot. He still has the other four pins in his leg, but now there is a cast molded around them so that he can start walking again finally. He was hestitant at first but Monday he just took off and started walking and hasn't stopped since. He's so happy to be walking again. He still has a long road ahead of him though. However long you spend lengthening the leg you spend twice that in a cast letting the bone heal and harden. We spent a little over 5 weeks lengthening the leg so it will be at least 10 weeks before he gets the pins out and the cast off which will probably be sometime in February. Next week when school starts back after Thanksgiving break Noah gets to go back and join his class again now that we're done with the lengthening process and he's started walking on it. He can't wait.

Noah with his new red cast

A close up

And while we were taking pics Noah wanted to take one of both of us

Noah's 5th Surgery-The Big One

Originally posted October 23, 2008

On October 1st Noah had another surgery on his leg. This was the big one we've been hearing about and waiting for since he was a baby, the leg lengthening surgery. Because of the curve in the tibia bone in his right leg, that leg is about two to two and a half inches shorter than his left leg. As was to be expected Noah was not too happy to find out he was going to be having another surgery, but we let him know about it well in advance to prepare him for it this time since he's getting older now and can better understand what's happening to him. The surgery went well and Noah spent 3 days in the hospital this time. He came home with his leg all wrapped up, so for a few days we couldn't see what they had done to his leg and neither could he. When we went back down to MUSC the following week they removed the bandages around his leg and taught us what we needed to do to his leg everyday. He has four pins going into his leg, a pin going into the top of his foot, and a pin coming out of the bottom of his foot. The bone in his leg has been cut and we make four turns a day to spread the bone apart a millimeter each day so that new bone can grow and lengthen his leg. We also have to do thorough cleanings twice a day to make sure his leg does not get infected. He has tolerated the turnings pretty well, but the cleanings did not go very well in the beginning. It was very scary and painful for him. He was also in a lot of pain those first couple of weeks everytime his pain medicine started to wear off. After a couple of weeks though it started getting better. His leg has started healing, his pain has become less over time, and he's gotten used to the cleanings now and even likes to help with them.

Not too happy after his surgery.

Not feeling too well.

Enjoying the games in the big playroom at the hospital.

Practicing getting around with his walker.

Happy to be resting at home and not in the hospital anymore.

Noah's leg after the bandages came off.

The day after the bandages came off and after a couple of cleanings.

A view from the bottom of his foot.

After a few more days of cleanings. It's looking better every day.

Finally starting to feel like himself again.

Posing with his leg. It's healed nicely, and he isn't in much pain at all any more.

With three weeks passed since his surgery Noah has done very well. His leg has healed nicely, it's not bleeding anymore like it was in the beginning, his pain is nearly gone, and he's hopping all over the house like nothing's wrong. His doctor has been very pleased at the progress he's made, he's been surprised even. Noah's leg has grown about an inch now, and he still has a few weeks left of the lenthening process.

No More Cast

Originally posted February 29, 2008

At the beginning of February Noah finally got his cast off. He was thrilled to finally be rid of it, but not too thrilled with the process of removing it. There was alot of screaming and crying and trying to fend off the poor lady who was trying to accomplish this task. In the end he was happy it was off though and couldn't wait to get home and take a real bath. A couple weeks later he got a new brace with Spiderman on it and new Spiderman shoes with his lift on it. He really liked them and was surprised to see Spiderman all over his brace too.

Noah after the cast came off

Noah's new brace