Friday, March 16, 2007

AMC Support Website

Today we registered with http://www.amcsupport.org/ It is a place were families can find and share information about Arthrogryposis. We plan on attending their upcoming convention which will take place July 12th - 15th in Arlington just 2 1/2 hrs drive from Austin.

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1 comment:

- Beth said...

I wanted to say hi and welcome to AMC support group!

Your little one is adorable! Our daughter was born in Arlington and we took her to Scottish Rite when she was 2 weeks old. Of course we live in KY. She was adopted through Gladney, but Scottish Rite was a nice experience.

As a new mom I know it all can get sooooo overwhelming! Just make sure you breathe and enjoy your new baby boy!

You may also want to ask around on AMC Support more about some of the tests they have mentioned (Muscle and nerve biopsy, specifically). Many of our children have had that and the tests I don't believe for ANYONE has showed anything. Its one of those things that likely will do nothing, but it has sure harmed my daughters muscle, leaving it very weak, not to mention a HUGE scar. I think many of us share in that we would not do that test, if we had it to do over.

Remember to ask and see what they will learn, if anything. Once they tell you that ask "How will that affect his care?" Even if we had found something with the biopsy we were later told it wouldn't have changed her care....

Love that sweet boy! :)

March 16, 2007 at 11:31 PM

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