Nick is on the fence about fencing. During class last Monday night his foot and knee hurt. He really needs to be careful how he positions his foot to protect his knee and I am not sure he is able to do that. Right now we are waiting on a new insert/brace that Dr. Standard and Anil Behave PT Director at the RIAO have teamed up to create. Actually Nick will be testing at least 2 creations that we hope will help Nick with his athletic pursuits. This is only a trial but if it is successful it could help so many people. Anil told me that at a recent orthopedic conference he said “Children who have amputations receive a $10,000 prosthesis, while children who keep their leg receive a $50 insert” (thats a paraphrase really but I think the messages is clear).
I shared the following article, The Miracle Manufacturers: Limb Salvage and the IDEO Team when it first appeared and even messaged the creator of the Intrepid Dynamic Exoskeletal Orthosis. I also sent it to Dr. Standard. This article really made me think about what Nick might need long term. The IDEO helped soldiers go back to war. Previously they were in pain and some even sought amputations for limbs that had been salvaged. The IDEO was a game changer. I hope the orthotic Dr. Standard and Anil are creating will be a game changer for FH kids the way the IDEO is for the soldiers. There is no guarantee
Needing some kind of assistance isn’t something that worries me. Nicks foot is unique, his fibular hemimelia on the severe end. When it comes to his foot, surgical interventions are done. His foot handles every day life just fine. At home he walks barefoot all the time and has no pain. Running and high impact activities are not always so easy.
This endeavor makes us love Dr. Standard even more, which I am sure you all thought was not possible. The reason is the fact that he is more than willing to think outside the surgical box, in terms of solutions. He thinks about what life will be like for Nicholas and other children who have limb saving treatment. Not just function now, but long term. That may sound like common sense to you but I am telling you, not all doctors are looking at the big picture.
Nick’s leg will never perform as the average leg would. Some kids with fibular hemimelia have less severe cases and wont need additional help. My kid will and Dr. S is on it.