So with relief that there was a doctor out there that could help Madi we were able to just enjoy watching her grow. She never has failed to amaze me. She eventually figured out her own little way of crawling. With her knee one side and her foot on her shorter side. 
She very quickly figured out that she had an advantage with her shorter leg. She could get her shorter leg up to things and hoist herself up, and so she quickly learned how to go up the stairs. As our trip to Florida came closer, I became a little more nervous. Would if we got there and he changed his mind? Would if her condition was even more severe than he thought? I wrote down every question I could think of and we embarked on our trip to West Palm Beach. We had xrays done and when we finally got to see Dr. Paley, he outlined his plan for Madi. He said that her right femur was about 8cm shorter than her left femur and that her right hip was very deformed but was present which was good. He said that when she was full grown her discrepancy was predicted to be 21 cm. We had a lot of work to do! He told us she would need a Super Hip Surgery at the age of two. This would correct the deformity of the hip and stabilize it to prepare her for the lengthening process. She would then need 2-3 lengthenings. Two lengthenings if she was predicted to be tall and three if she was not. If we thought she would be tall then they could eventually stop the growth in her good leg to even her out, which is much easier then a lengthening. This could only be done if she could stand to lose some total height though. Only 8cm can be done during each lengthening process and they would be done when she was 4,8 and 12 years old. Ok, so we had a plan. The hip surgery would only require us to be in Florida for 2 weeks. Harder to hear was that the lengthening would require us to be in Florida for 4 months. I still haven't figured out how I am going to do that. One thing at a time I guess. Dr. Paley prescribed Madi with a 7cm lift and an AFO brace to stabilize her ankle.
She very quickly figured out that she had an advantage with her shorter leg. She could get her shorter leg up to things and hoist herself up, and so she quickly learned how to go up the stairs. As our trip to Florida came closer, I became a little more nervous. Would if we got there and he changed his mind? Would if her condition was even more severe than he thought? I wrote down every question I could think of and we embarked on our trip to West Palm Beach. We had xrays done and when we finally got to see Dr. Paley, he outlined his plan for Madi. He said that her right femur was about 8cm shorter than her left femur and that her right hip was very deformed but was present which was good. He said that when she was full grown her discrepancy was predicted to be 21 cm. We had a lot of work to do! He told us she would need a Super Hip Surgery at the age of two. This would correct the deformity of the hip and stabilize it to prepare her for the lengthening process. She would then need 2-3 lengthenings. Two lengthenings if she was predicted to be tall and three if she was not. If we thought she would be tall then they could eventually stop the growth in her good leg to even her out, which is much easier then a lengthening. This could only be done if she could stand to lose some total height though. Only 8cm can be done during each lengthening process and they would be done when she was 4,8 and 12 years old. Ok, so we had a plan. The hip surgery would only require us to be in Florida for 2 weeks. Harder to hear was that the lengthening would require us to be in Florida for 4 months. I still haven't figured out how I am going to do that. One thing at a time I guess. Dr. Paley prescribed Madi with a 7cm lift and an AFO brace to stabilize her ankle. 
So when we got home we immediately got her brace fitted and got some shoes made for her. It may have been a little premature as she hated wearing them. She was much happier crawling. Crawling was faster and more efficient for her. Just as I was starting to worry that she just wasn't getting this walking thing, she took off. Which takes us to the present. Madi just started walking a few weeks ago and now walks circles around our house. I have said it before but I have to say it again. This little girl just amazes me everyday. There is nothing that holds her back. I am so proud of her! 
Hi! It's great to hear and see that Madi is getting along so well. Our Son Benito (2 years old) has PFFD in his right leg and seems to share the same spirit that Madi has: he simply gets on and seems to be little disturbed by the fact that his one leg is shorter than the other. He has a prosthesis and walks quite well with it. We live in Germany and now consider travelling all the way to Dr. Paley for a super hip operation. Do you already know where you will stay and whether there is some kind of special accommodation for parents? We also have no idea how to deal with spending that much time in Florida - particularly as Benito also has a twin sister... Best wishes, Christa
ReplyDeleteHi Christa. Dr. Paley is amazing. You are in the best of hands with him. We are planning to rent a condo when we go down. I know there is a place on hospital grounds called Quantum House. It is a very nice place for families to stay while they are having a child treated at the hospital. I think they charge $35 a night. They do have a website if you google them. I would have stayed there but have too many people coming with me for them to accomidate. The rooms are for a max of 4 people. I know many people who have stayed there though and they loved it. I will continue to update the blog, hopefully more often so check back in. Best wishes to you!
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