Save-a-Limb, Save a Mom

So it’s been a busy few weeks. I wrote a post updating on Nick’s last appointment with Dr. Standard and I never shared it. Basically we are getting Nicholas a new insert for his shoe. He has outgrown his current one so hopefully a new one will help the pain! It is not however the long term answer.

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After reviewing Nicks x-rays Dr. Standard had two long term options that would help Nick’s pain.

  1. Foot surgery and external fixator to change the way his foot works. Nick’s got some motion that is not helping him and he bears weight on the middle of his foot instead of the heel and toes like a standard foot would. Nick’s pain is right in the middle.
  2. A symes amputation (symes means just his foot).

I have worried about the viability of Nick’s foot on and off for a few years, however since he is mostly pain free and the past pain was solved by surgery once and a shoe insert other times, it was not something we thought a lot about. He really has only had small periods of foot pain over his life span.  

If an insert helps Nick really will have time to weigh his options and these are truly his options. At this point Nicholas can direct what happens next. It’s his body. That said, I know how hard this choice is, Steven and I made it 12 years ago, so I let Nick know we could make it again if he wants us to. To which he replied “Ok, as long as you choose to keep my foot.” We talked about choosing what will let him do what he wants to be able to do. Nick said he wants to be able to participate in PE class, and play basketball for fun and walk without pain. He’s not asking for a lot. 

At Nick’s visit with Dr.Standard I really couldn’t formulate questions. I was caught off guard hearing amputation as an option but I think it’s an option that is always there. It would likely give the best functional result, however Nick wants to keep his foot. I don’t think Dr. Standard meant amputation was the answer but I appreciate his willingness to give Nick all options. Dr. Standard has taken the best care of Nick. We’ve worked together to make the best choices possible and I believe we have been successful. I can’t look at my son and think otherwise.

Nicholas amazes me in so many ways having nothing to do with his leg! He’s not stressing the pain he is having. He is frustrated by the crutches but he his hoping the insert works. If it does not he wants surgery which I learned today may not be what I thought.

I had the chance to talk to Dr. Standard a little at save-a-limb and he said Nick would not necessarily need a fixator. He said he can do internal fixation and cast him. I let him know Nick is not against a fixator. I think it’s me that really didn’t want that again. He’s had three already! Still I want Nicholas to have whatever will work best for his foot!

My main question though for Dr. Standard was “will this be a long term fix” and he said yes. I am sure there are other things to ask and I will if the insert does not work.

Save-a-Limb is a beautiful event in a multitude of ways but what I love best is the Moms. I love meeting, hugging and talking to the Moms. I needed them today. I had been worried about how it would feel to be there with Nick having a hard time but it was fine. It was better than fine! My only regret is that I did not get to spend as much time as I wanted with everyone!!

We also met a family from Thailand, new to RIAO, who found their way there through this blog. It’s not a new story but it never gets old and it makes my heart happy. I could tell Nick felt proud too. I am so thankful that they found us. Hearing Nicholas answer their questions and talk about his experience was good for me today. It helps me to see the big picture. The big picture is Nick will be ok, in truth he already is. Knowing he is ok is all I need to be ok. Hearing Dr. Standard’s confidence in the surgical fix was great too.

Fibular Hemimelia is not the easy ship.That remains true however we have the best shipmates on this journey and for that I am always grateful.

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Nicholas and Jonathan showing each other their braces.
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Me and Alison, Jonathan’s super mom, my super friend and our FH Family! Check out her awesome SAL Post here
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It looks to me like FH is clearly the FUN ship… even if these kids are actually piled in a car.