Saturday, January 21, 2012

Busy, busy!

Things have been so busy with the holidays that I haven't had a chance to update. We haven't had many appointments lately. We saw the hand specialist on October 31st and she told us she was pleased with how well he was using both hands. Right now we will focus on his legs as far as surgery and schedule to have his fingers worked on in a year or so. We also saw Genetics November 10. We knew that what Avery was born with is very rare but were not sure just how rare it really is. Drs told us there are only 10 documented cases in the world like Avery's. They didn't have a lot of information but told us we would probably have a 1 in 4 chance of it happening with another child. He has a 50% chance of passing the gene to his children. That was hard to hear. I'm looking forward to seeing Dr Sinclair and getting his surgery schedule. He is such a determined little boy and is trying so hard to stand and crawl. We postponed his Physical Therapy until after his surgery because he's actually quite advanced in his developmental skills. He amazes me more and more everyday.

1 comment:

  1. Not sure if you still are checking this blog, but I wanted to reach out to you. My son Liam was born in December 2011 with this same condition. FATCO. He had a right leg amputation and a finger separation. I would love to talk to you if possible. My email is amcfarlandrn@gmail.com

    ReplyDelete