When we went to Baltimore for our appointment we knew that it would be a long wait. Based on the research I had done about the RIAO we were prepared to wait six or more hours. I also knew that Dr. Paley had actually studied under Gavril Ilizarov, the guy who discovered the process that could save my boys leg. Google him, it is fascinating. But otherwise we did not know what to expect.
I think I expected Dr. Paley to be an aggressive fast talking type of guy. In the end he was no cowboy in my opinion. He was confidence personified. But Dr. Paley was not the first doctor we saw at the Rubin Institute for Advanced Orthopedics. We saw a doctor who had just started at the RIAO a few months before, Dr. Shawn Standard. We did not know then that he would become Nicholas’ doctor but we liked him from the start. Dr. Standard sat and talked with us for a long while and examined Nicholas. When Dr. Paley came in he examined Nicholas, looked at x-rays and said “this is a functional foot”. The reconstruction of his ankle was the complicated part but Dr. Paley was sure it could be done because he had done it before. Of course there were no promises of a complication free process but a functional foot is what we were hoping for.
I know there is so much more to that first visit and that conversation but it is all a blur. We were probably there for 4 or 5 hours. Dr.Paley said that lengthening and reconstruction would work for Nicholas. He said that there was no reason to amputate Nicholas’ leg and that he had treated children with similar degrees of FH and had success. In fact hundreds of children with fh were treated at his center. Which is pretty impressive considering how rare it is. He too admitted that Nicholas would not necessarily be a track star and that amputation would be one surgery and produce a very functional result. He told us he could do that if that was what we wanted. Lengthening was after all a huge commitment. It would effect our whole family, involving months of appointments, physical therapy and daily care. Nicholas would need at least three lengthening surgeries each likely to be 6 months or more in an external fixator. Another possibility was a surgery to stop the growth in Nicholas’ left leg so his right would not need to be lengthened quite so much but Dr. Paley was not sure if it would be an option for Nicholas with his estimated discrepancy of 8 inches at maturity.
Lengthening would not be an easy road but at the end of that road Nicholas would have not only a functional foot and two legs of equal length, he would also have a foot with sensation. He would feel the sand between his toes. I didn’t really care if Nicholas would not be as fast or as athletic if he had the lengthening. I had an image in my head and heart of Nicholas waking up in the morning and popping out of bed with the legs he was born with.