rar's blog

From
http://www.transitiontimes.com/viewstory.cfm?ID=6626

The text is below also:

Title: Sarah Reinertsen: Don’t Give Up… Not Once…Not Ever
By Steve Brown - Editor, TransitionTimes.com

We tried the first prosthesis for a while (see first blog entry) - it was a failure. It caused bruising, it overheated her, it didn't breathe, etc. I could go on for days about all of its deficits. We were always upbeat about the prosthesis in front of her when we put it on her, but her reality over-took our spin. After a while she cried when she saw it. We got it adjusted a few times for a few months. One time we went in for an adjustment we met with a different prostheticist. We asked about other designs. He designed an extra-lightweight shoe lift that straps on to a regular shoe with velcro.

Our daughter got her first prosthesis. It became obvious though that the person who designed this one was thinking of people who have amputations - not with people who have fully functional ankles/knees. This prosthesis, the prostheticist said, was desgined to remove weight off of the foot and transfer it to the skin/hip. Her first imaging showed a potential Class C Aitkins with a complete foot, ankle, and no hemimelia of the tibia - so we were a bit perplexed - but he said that's what is supposed to happen.

My grandmother sent me an article in the New York Times which had some interesting new technologies. Both are designed with cancer patients in mind but I think they might benefit PFFD patients as well.

The first is a lattice made of biodegradable polymers infused with cells that have the capacity to turn into bone cells. Over time the scaffold degrades and is replaced by the patients own bone cells. Much of the research on it appears to be done at Rice University and the surgeries at Texas Medical Center. Some good web links are a general audience level lecture , some MIT class notes and a chemical engineering peer-reviewed article.