Monday was Nick’s post op appointment with Dr. Standard. The op being the 8 plate insertion back in January. It felt like we had not been there in forever, however through web chats, following other families, and having the fh potluck at hp (Hackerman Patz) in March, we didn’t exactly feel out of touch. 

Here’s the pic that really says a thousand words… To me it reads like a song. A very cheerful tune. Maybe an Irish jig.



You can see the 8 plate in his knee, you can see that there is a length difference (Just 2 centimeters!!!) and you can see that my boy has really long legs. 

That’s what strikes me. Two long and straight legs. Dr. Standard said that everything looks great. In fact I had a bit of a surprise. Years ago we had talked about Dr. Standard doing a “final correction” to Nick’s ankle. This surgery would involve a diagonal cut through Nick’s tibia which could not be done till the growth plates at the bottom of the tibia were closed. So this was a surgery that would be done at the end to get Nick’s foot into the right position. The right position being directly under his leg. 

Well it turns out Nick’s foot it is in the right position or as right as it needs to be. I guess we’ve had so much going on at the last few visits I hadn’t really talked to Dr. S about the long term stuff. Now the long term stuff is just lengthening (internal lengthening by the way!!!!!). And of course 8 plate removal will have to happen. 

So this means Nick is really done with external fixators. Done. No more. Bye Bye! I was pretty excited discussing it with him in the cafeteria after his appointment and Nick said “You never know Mom. Don’t get your hopes up.” That sounds kind of negative but he really didn’t say it in a negative way. Just sort of ‘hay you never know’.  Of course he’s right and yet… 

It feels like a victory to me. Look at those legs. Nick will be 10 in August. He’s getting closer and closer to my height. We can share t-shirts now and if I were slimmer I bet we could share pants too. He is growing and thriving and running and playing and that’s the dream coming true every day. 

I will post soon about the fibular hemimelia potluck (another one is coming soon), Nick’s foot (because it’s all about a functional foot in the end), and the five fibular hemimelia families we saw at the RIAO on Monday! Yes FIVE in one day. There may have been others for all we know.

4 thoughts on “Legs!”

    1. Our grandson is 5 days old and we are learning more than I ever dreamed about FH. 6 days ago I had no idea what it meant.


      1. Most parents had never heard of it so I am sure most grandparents have not either. It is a lot to take in in terms of information and the emotions of it all. IF I can be of help in any way feel free to contact me. There is also support on Facebook. You and your family are not alone!


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