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.

Sunday, September 26, 2010

New DOCTORS new plans and new CASTS!

well let the adventures begin! sophie and ben are both in LONG LEG CASTS. both kids both legs. straighten out those crazy feet. this doctor is RUTHLESS in getting these feet into position. its hard for us to deal with as it hurts the kids a bit as the stretch is so tight. but this COULD be all Ben needs to have straight feet. we thought he had a rotation and would need a derotation but he doesnt! its all in his foot! hoping this works to avoid surgery until he is much older. Sophie on the other hand this is just the beginning for her little legs. the stretch is very tight for her and she complains a lot. but once she gets these feet straightened out we will work on her hips. then her knees. For Sophie's hands we will do nothing for the time being. As she needs her hands to motor. Ben needs one surgery on his one hand. its fairly minor when you consider what COULD be done. tendon transfer will solve most of his hand problems. It is a pain to go to philly for good care but we just werent finding it locally.

Saturday, September 4, 2010

one year ago

these two were essentially helpless.

sophie lifts her legs

amazing Sophie and Wonder Ben

boy the things these two have been doing! they are headed to Philly the end of the month to see a doctor who actually has hope for them. After a year of seeing doctors who are misinformed about AMC, refuse to do anything for them, or are just plain not interested we are excited that someone sees them as we do, untapped potential. Looking back over the last year Sophie has gone from being unable to do ANYTHING for herself to doing all kinds of things. She can sit up, roll over, scoot, crawl, kneel, go down stairs, feed herself, and use a cup, and now do you know what she is doing? lifting her knees to make them come together as she sits on her bottom. Think butterfly. if she was to sit on her bottom her legs naturally fall open like a butterfly. but with effort she can LIFT them up. this is huge for her. she was not able to lift them even an INCH a year ago.

Ben has gone from toddling to walking and RUNNING. he doesnt run fast like other kids but he definitely runs. and he has learned to feed himself dress himself put on his afos put on his shoes take off his clothes shoes and afos and is learning to pedal a bike! that is hard work pedaling a bike! When we came home with him we had little hope of him riding a bike. but now? perhaps there will be a family bike ride in our future. I think we might have to look into an adapted bike for him.