Fibular Hemimelia Forever Part Two: Fencing, Functional Panic and Famous Nick!

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These photos were taken last night. Nick and I had a great time at his school, at a sort of reading pajama party. Check out the huge cup of Jolly Ranchers. Nick won it by estimating how many were in it and being the closest to the actual number. He guessed 110 and there were 116. You might also notice the walker in the photo. Foot and ankle pain… sigh.  Might as well start at the beginning.

Monday Nicholas had his first fencing class. Meanwhile I had my most crappy feeling parent moment ever! Ever! I did not talk to the coach before the class about Nick’s leg. For some reason it never occurred to me. I also did not talk to Nick about only doing what his comfortable for him. Did you know that fencing requires a ton of fancy footwork? I didn’t.

Essentially Nick tried to do everything including standing on his toes and other things that he can not possibly do with a fused ankle. The end result was pain. Pain that had him calling me from school on Tuesday. Pain that had him calling me from school yesterday (that’s when I brought the walker in to him).

My heart really hurts right now because I feel like, had talked to Nick and his coach, this could have been avoided. Then I feel bad for feeling guilty, because this is not about me, and I shouldn’t dwell on my own feelings. A wise friend shared this tidbit, unrelated to Nick’s leg but it fits “Guilt is for a jury of your peers, it has no place in parenting.” I love it and I try to believe it. Feeling bad, and then feeling bad for feeling bad sounds ridiculous, but it happens!

I didn’t just sit around feeling like a bad parent. I emailed Dr. Standards Physician Assistant, Allison, and here is part of her response:

I talked to Dr. Standard and he said rest is going to be the best treatment for right now to get him over this flare-up.  He can use the walker, and if you feel like it is getting too painful we can put him in a full contact cast to rest the foot for about a week.  In the future, you can try some of the new accommodative orthotics that Dr. Standard talked with you about.

When fencing he should try to lead with his left foot.  It will require some adjustment if he is right handed but it alleviate some of the pressure on his fibular hemimelia leg.

I also left a message for Ann, Dr. Standard’s administrative assistant, because by the time I had to bring Nick the walker I was starting to feel that familiar panic in my heart. It’s a relatively calm panic. I would call it functional panic. Still it’s awful. I felt awful thinking of Nick being in pain, slowed down by the walker, stressed about his leg. His foot had it’s final correction. It’s all good now isn’t it?

Well it’s not. Didn’t I post Fibular Hemimelia Forever not too long ago? This is part of managing fh. This is a flare up. Flare ups can and will happen. Nick’s foot and ankle are complex. I know I knew things could come up. I didn’t think it would be so soon. We will have to be more cautious. Although it is encouraging that Dr. Standard did not say not to fence, and Nick still wants to try. His coach says he can do it, and he can adapt to work with his FH.

Nicks fencing coach seemed really supportive and that helps a lot. The plan is to try to keep going, although Nick says he really wants to swim. I don’t know how doing both would be schedule wise. We did intent to do a weekly swim lesson at the YMCA but maybe he should do more than that. The schedule is really a potential issue though. Four kids, various activities, and school in the mix… our calendar feels pretty full already.  I will not be one of those parents who over schedules their kids, running around from activity to activity every day. Well, with four children, I may not be able to avoid the running around part.

One more thing about school… I was worried Nick would be embarrassed or upset to have to use the walker. Not so much! Yesterday he came home and said:

Three weeks in [to school] and I am already famous.

That’s my boy!

*** Regarding fencing, I will be posting soon about the Paralympics and a world class fencer with fh!***

4 thoughts on “Fibular Hemimelia Forever Part Two: Fencing, Functional Panic and Famous Nick!”

  1. Don’t be so hard on yourself, we can’t foresee everything, we’re parents, not psychics 🙂
    PS – I love that the office had fencing advice for Nick, that is prettty awesome!

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  2. Hang in there Jen! We have had quite the bumpy road in school since the leg lengthening :S A week ago Sunday Billy’s outer ankle got hit with a cabinet door while doing dishes, and it hurt too much for him to walk. He was in the wheelchair at school all last week to rest it (tried crutches and walking boot also) and it was finally feeling better by Friday night. He started walking over the weekend and that lasted for about a day and a half before the pain returned. Had to take him to ortho on Monday, and doc determined the joint was injured (although thankfully nothing broken!) and with his anatomy the only way to immobilize it was a walking cast that put all the weight on the heel and none on the toe. So, now we have a cast on till mid October, sigh… never a dull huh? Our kids may be wonderful and we are doing what is best for them, but they still are slightly fragile 😦

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    1. Connie that just sucks! I hate it when it feels like “extra” things happen to our guys. They have dealt with enough! You are right about the fragile thing. I have to remember it more.

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