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julian is now 1 years old, we went to see dr.davidson @ chop in philly. what a long visit. i just get so frustrated with everything. now they gave me a script for him to try a shoe lift with a wedge or pipe in foot im not sure what that means. his leg is now about 4 inches shorter than the left. he wants to walk so bad but cant. im getting so frustrated. 1st the drive there is 2 hours, we wait for about 1 hr ,1 1/2 hr for the dr to be in the room maybe 10 minutes and say we'll see u back in 6 months & do xrays. he wants to see if julians hip will form any more. hershey medical center told me that he doesnt have a hip. im confused. i know the whole thing called osseifacation. options are amputating the foot and turning his ankle around for the knee, because he doesnt have a kneecap either. I just am so tired, and just to think we have a long road ahead to come


Hold tight. It's hard, I know. I was in 4th grade before they did anything more than a big clunky extension brace. My hip was "under formed" as well, but I do have a kneecap. It's really tiny though. They waited with me as well to see how much growing and hardening the bones would do on thier own. I think that's probably a good sign. the more of his own anatomy he can work with the better. I'm not sure just how my learning to walk went, but I did so before age 1 (I'm told). I think it must have been the bent knee walk thing we do, that or the extension was on me. I have a huge difference too, about 8-10 inches. If you don't get something, ask again. If you still don't get it, badger them until you do. If the Dr. is too technical ask a nurse. They always had a way of making me understand what all the jargon meant. In the end, I had a metal plate shaped like a bent L put into my hip to jelp support it while the bone got strong. The removed it after a few years and I have a hip now. Cute little bugger, but it's there. They did a Symes amputation on me, and I can bear weight on my stump without my leg on. It really helps with my mobility. The fake leg is hands down better than the extension brace, but the brace did it's job until I was ready for surgery. You'll get thru it. He'll get thru it. Just please, as he grows, make sure YOU understand what's hapenning so you can make HIM understand. It's made all the difference for me. I'm 42 now and I've been down the road your travelling. It gets better. You'll see him ride a bike, dance at homecoming, all of it. Hang in there.

Ana, dr. Davidson is great. i have talked to the nurse practionares a ton and they are full of information. My husband did not get the warm fuzzy feeling from dr. davidson but another parent highly recommended him as he only works with children as dr. paley works with adults as with children. my suggestion is to call the nurses. they will answer as many questions as you throw at them and explain things to you in normal person talk. chop is a great hospital. i went there for my daughter's two surgeries.


Please, please, please don't worry too much about that. I was 18mos old before I walked because of PFFD and my mom regials all of the family with this story:

"I was in the kitchen on the phone and Jeremy (my cousin who was 4 mos younger than I) came running out from under the table and at second glance there was my little girl CHASING after him! I was so shocked I dropped the phone, and from then on I knew that you were not going to let ANYONE stand in your way of doing what you wanted! So I never allowed ANYONE even your doctors say that it was not possible."

I am now 29 I waitress and go to school. I even participated in relay races, baseball, and football all throughout my childhood. Even when I was on crutches it never slowed me down. O owe that to my parents they never let me say "I can't" they only allowed "I will will do my be"

I hope that helps....