Wednesday, March 3, 2010
We went to her second appointment and it was about the same as the first not much hope on lengthening and the “let’s just wait and see” approach was introduced. Anyone who really knows me knows that I’m not a very patient person (I think that is something God has tried to teach me over the years) so the wait and see plan didn’t really sit well with me but what else could I do? So we went home to wait for her next appointment. We tried to stay positive. I found a website for PFFD that helped give me some incite as to what others were going through. I read as much as I could find on the internet about PFFD.
Since Aubrey was premature she progressed a little slower at things. At around 7 months she started crawling (she would army crawl on her belly) and around 9 months started sitting up but at 10 months she still didn’t like to stand up. Her pediatrician wasn’t too concerned with it and said she would figure it out. When we had our appointment at Scottish Rite I told the doctor my concern and they suggested we look into Early Childhood Intervention (ECI). The ECI therapist was fabulous. She showed us techniques and exercises to do with Aubrey that would help strengthen her muscles and encourage her to stand up……she even wore little weights on her legs (which Aubrey didn’t really care for). Once Letty (ECI therapist) started coming it didn’t take long for us to see progress.
When we went back to Scottish Rite in June 2007 we learned that the concern was not with the amount of length that would be needed on the femur (they said they thought that was possible) but the concern was with her hip. In most cases of PFFD it’s not just the femur that’s affected but there is usually some anomaly in the hip as well as the knee and ankle… and like I had mentioned earlier some are even missing toes or have other anomalies. They said her hip was pretty severe and that she did not appear to have much of a socket and a head could not be seen. It was possible though that the head had not ossified yet so we would “wait and see” if a head appeared on her femur. They also said she was ready for her first prosthesis! So we had our first casting….that was fun…….if you like ear piercing screams.
After three more trips to Dallas for fittings Aubrey got her first prosthesis! We got to pick out a design for it and of course daddy wanted camo….so we went with pink and green camo. At 18 months, after having her prosthesis for only 4 months, Aubrey was walking! Shortly after learning to walk with her prosthesis she started walking without it.
In the meantime while Aubrey was learning to walk and we were waiting to see about her hip I continued my research. I kept seeing this doctor’s name, Dror Paley, on the PFFD website and on other blogs. He lived in Baltimore and was known for taking on cases that other doctors wouldn’t touch. So I began researching him. I was amazed at how many websites there were talking about him and what he did. I’m not really sure how he finds time to sleep with all that he does. He has performed more than 10,000 limb lengthening and reconstruction-related procedures on patients from all over the United States and from more than 70 countries from six continents and has developed (created/invented) more than 100 new operative procedures. He has published over 100 articles in the peer-reviewed literature and has authored and edited 5 books and 33 book chapters. He is fluent and lectures in six languages – English, Hebrew, French, Italian, Spanish and Russian and has received several awards, including a Gubernatorial Citation for Outstanding Contributions in Orthopedic surgery in 1990. Paley also initiated and organized the non – profit organization Save-a-Limb Fund and the annual Save a Limb fundraising bike ride. The list goes on and on. He is the best of the best and I knew at some point we would meet this man.