This blog is about our journey with Arthrogryposis(AMC). It is not just a walk in the park. Flying all over the country for medical treatments for our two kids. Therapies and surgeries. Not always fun but always necessary.

Saturday, January 8, 2011

another trip to philly

kids got short casts to hold their correction until their AFOs are ready. much screaming by sophie, as is the norm. Ben got black and sophie got pink. Ben got walking boots but so far he isnt walking. his knees are stiff from being bent in casts for so long. but they seem to be stretching out more all the time. When I pick him up I let his legs hang so the weight of his feet and legs gently pull stretching his knee backs. Still no date for osteotomy.

I asked about a chair for sophie as she is getting too big and too old to be in the stroller all the time(although she never complains about it) basically I was told that since she has upcoming fixators (at some unknown date in the future) that any chair fitted for her wouldnt work then and not to do anything. soon her little legs will be too long for the stroller. then what? 30 pounds is a lot of baby to carry around all the time. and she cant really even hold on. I am frustrated. I know that if you get an electric chair you cant get insurance to give you a manual. so I wanted only a manual so that later when she gets a power chair she will have that one to fall back on. and we dont have a really accessible house right now for her to use a power chair. but I cant get one because at some date in the future she will change? wth? Maybe at home we can try to get one. Start with pt locally and see if they will work with us to get a chair. We have met our deductible for the year so this is a good time to do it. and by the time she would be ready for a power chair way down the road we would have new insurance.

their feet are looking good. bens heel is still just a bit rolled under but they werent too concerned at this point. they said if in time it becomes a problem they can do surgery to fix it but it isnt really necessary at this point. it usually resolves itself OR isnt a problem for the person.


  1. we too are so familiar with the wheelchair dilemma. We have a 5 year old son in a power chair. If you ever have any questions feel free to email me. We have somethings we would have done differently if we had known more. We didn't have anyone very familiar with chairs for kids so we got what we got. It is a good chair and works well for him but we would like to have gotten a lift option for the seat and a universal control pack in the chair for environmental controls. He has very limited use of his hands. Anyway hope it goes well and email if you want.

  2. We had a script for a wheelchair for our daughter. I just didn't want to face that we had to go down that road at that time and I waited too long. Now she no longer qualifies, not because there aren't times when we really really need it (she weighs 80 pounds), but because when we see the doc first thing in the morning when she is at her best she doesn't need it. Learned my lesson on that one.