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.