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.

Monday, October 26, 2009

shriners app

I filled out the Shriners applications for SOphie and Ben. I will mail them back today. Hopefully we will be accepted for care. Do they ever turn anyone away? they definitely fall in the category for orthopedic treatment. We were very happy with the care we received there when we took Ethan there for his club foot. after much hemming and hawing and seeing lots of different doctors and no one doing ANYTHING, shriners just got the job done without all the run around. So I have high hopes that they will jump right in with Sophie and Ben and get things straightened out for them so they can do what other kids do.

Sophie's main need is to have her legs released so she can learn to walk. She also needs to have something done with her hands as they rotate outward making self feeding and care difficult if not impossible and her elbows do not bend very far making her arms fairly useless for self care. I would also not be surprised if she has scoliosis. with her legs always bent she has to lean way over to one side and scoot along on her bottom when she wants to move.

Ben's club feet tht have been "corrected" in country of his birth after 7 surgeries are definitely NOT correct. but he IS walking so thats a start. and he has one hand that needs to be able to get to neutral or better so that he can catch himself when he falls and pull up his pants and things like that. his other hand works fine for the moment. he can feed himself although he prefers to be fed.

Wednesday, October 14, 2009

the kids are home

but we are not going to rush into any medical stuff for a bit. We want them to learn home and family and mama and papa first. They need to know that we will be there to comfort them. Ben's little feet are still curled up in his AFOs. they are going to need more work. Sophie's little hands are so twisted and her elbows dont bend so its hard to do anything like get dressed or eat. Her thumb is in her palm on both hands. Her knees are at about 90 degrees all the time. I am anxious for them to be better so they can do all the things other kids do but at the same time not anxious for them to be in pain. if anyone has any thoughts per adaptive devices I would love to hear.