I am about to loose any street cred I had regarding knowledge of fibular hemimelia. Seriously. Maybe just stop reading now. Why come here if I don’t know basic information such as…
Nick’s ankle is fused.
I didn’t know that.
My only excuse is that I swear Dr. Standard never used the word fused to describe Nick. Confused yet? I certainly am.
Dr. S basically said Nick’s ankle is very typical for his type of fibular hemimelia. “His type” hmmm… I know it’s type 3 and I know there are subtypes but I have no idea which of those it is. I knew it was the type that needed the super ankle surgery. I knew that there were bone cuts and all kinds of things done in that surgery that I never cared to ask for details on. I have never claimed to understand that stuff. Thank goodness!
What I do know is that I usually referred to it as on the severe side. That was the type according to me. Severe or maybe I said moderate to severe. Because he’s done so well and we had options. In a way severe sounds like the worst. Nick isn’t the worst it could be. He had bones in his foot to work with.
Anyway the fact that I had to ask Dr. Standard if Nick’s ankle is considered fused felt really dumb. I write about fh here, I support other families through email and the Facebook group. They come to me for information. Like I know what I am talking about, meanwhile I missed this bit of info about my boy.
We have always focused more on what the result of what was being done would be. The last surgery Dr. Standard put Nick’s foot in a better position and he straightened out his tibia which had a bit of a bend still and lengthened to the point of Nick being even! Thats what that mega fixator did. That’s what I know. But I am thinking I missed something (since I didn’t think Nicks ankle was always considered fused or was that word just not used?).
It also doesn’t matter. Nick has what he has. It is what it is. His fused ankle is working for him. He has a stiff but stable joint. I knew that already. He has no pain. He walks and runs and swims. He talks about trying new things. He does not feel limited by this fused ankle. Fused sounds like a bad word at times in the fh groups… “It might have to be fused”, “Better to amputate than be fused”, and so on but it’s not a failure and not a bad word and just because I am using it to describe Nick now doesn’t actually change anything.
Except now I can tell parents who fear fusion that it’s just fine! Nick is fused and fancy free. Nicholas will likely tell me tomorrow “I bet fused and fancy free sounded cooler in your head than it did out loud”. And I will tell him it doesn’t matter cause I don’t care about cool and since my street cred is gone already, I’ve got nothing to loose.