Back to Florida – With Really High Hopes!

As we are packing to head back to Florida this week for a plate-removal surgery for Knox, I realized we haven’t shared some important news about Knox’s surgery outcome with everyone!

It’s very hopeful news, and it could prove to be completely game-changing to what we were planning for as far as Knox’s mobility.

We leave this Thursday in time for Knox’s pre-op appointment on Friday, then he’ll have surgery on Monday, June 10 and do intensive PT for two weeks with the Paley Institute team to figure out how to work with new double-jointed hip of his. 🙂 

To backtrack a bit, the plan was always to build Knox a hip socket out of available pelvic bone, and then place his natural knee in the socket to function as his hip joint. This is a good alternative for kids like Knox. However, it means his hip functionality would be limited to what a knee can do (e.g. not abduct, rotate, or bend forward (or backward in Knox’s case).

But, we found out on surgery day that Dr. Paley was able to build Knox a much better hip than anybody thought was possible! This is because he found that Knox did have the “ball” part of the hip ball and socket, AKA a femoral head. This never showed up on imaging, even though doctors were watching for it. Dr. Paley said the cartilage was the size of a marble, inside of which was a piece of bone the size of the tip of a fingernail. Apparently, this is enough to make a joint! He connected Knox’s very small femur to the tiny femoral head with itty-bitty screws and immobilized those bones with a metal plate for 3 months until they are healed together…which is now!

Dr. Paley said that after recovery, Knox should have close-to-normal range of motion in his hip — a testament to why we chose this doctor. Knowing that Knox will have the best hip possible makes the 10+ weeks in Florida 100% worth it!

So, Knox is basically double-jointed on his right hip. His hip joint and knee joint are side-by-side and will function together to allow him to do anything he wants. Dr. Paley said his brain and body will learn to use the “path of last resistance” for each movement. In all of our connections with other limb-different kids, we have never heard of another person like Knox who ended up with two joints at the hip like this. We can’t wait to see what he will do.

Additionally, we are so grateful to everyone who donated to Knox’s medical/travel fund. You allowed us to give him the best medical care possible, and honestly, we doubt that there’s another surgeon on the planet who could have delivered this amazing outcome for our little hero. XOXOXO

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