Carter

My son was born in 2000 and diagnosed with PFFD (about 6 weeks after he was born) at Primary Children's Hospital in Salt Lake City, Utah. When he was a year old we switched doctors and started being seen at Shriners, also in SLC. We were seen every six months until he was 5 at which time it was decided that we should start lengthening. The difference between his legs was 7cm. and his femur is also bowed at the top. Well, that was one year ago and our little guy, now six, is still in a cast. He has had so many complications. His bone has broken at the spot of the osteotomy two times since the lengthening device was removed. We love our doctor, S. Santora, and trust him but are very concerened about our son. We have been told that his muscles are too tight and not allowing his bone to grow and heal, instead his bone in bowed over and thus at risk for fracture not to mention that he has not produced new bone as expected. I am wondering about PT. After Carter's lengthening we were given a sheet with exercises to do at home-it was hard and Carter hated it. We did not recieve PT services while he wore the lengthening device (7 months). Does anyone have any advice? Should we request PT? We were not prepared for the difficulty of lengthening. We really thought it was just going to fix our son's leg and he would be back to himself in a few months. The whole thing has been difficult and affected Carter in so many ways (physically, schooling, socially). I would love any advice from anyone in a similar situation. I have visited this site in the past but not felt the need to tell our story. I now realize we need to build a better support system and be in contact with other families facing similar challenges. Thanks! Jamie