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Monday, March 15, 2010

Life is like a bowl of cherries.

Figured it was time for an update.

Bailey was seen at Shriner's Hospital on Friday March 5th. We originally thought we were going to get fitted for new braces but he took one look at her right foot and he was not happy at all. So Dr. vB decided to do serial casting on her right foot to try and correct her position in hopes of avoiding surgery. We go back the 22nd to get the 1st cast off and the 2nd put on. So far she has done really well with it. She was a little irritated the first day when she realized she couldnt walk around but she has since learned to stand and hobble around by herself.

Also, as I've said in previous posts, We've been patiently awaiting for Dr. Bamshad at Seattle Children's Hospital response. We recieved an e-mail from his assistant today stating that he believes Bailey does have Atypical Distal Arthrogryposis 2B. (i've never heard the 2B part and am currently awaiting a response on what he means by that) and that he doesn't feel making a trip out to see him would be of any help because her Genetics doctors here have done all the tests and evaluations that he would have suggested already. He did suggest she recieve another MRI in the future to monitor her brain development and here's the kicker... he wants us to consider enrolling Bailey in his research to identify specific gene alteration that could confirm the diagnosis of DA2B for for future children. I'm awaiting an e-mail of more information before I make that decision. I'm disappointed that we don't get to meet Dr. Bamshad at this time but I am thrilled to hear from one of the best Genetics doctors in the Country that Bailey's doctors have been doing everything possible from that stand point. :)

Thanks for reading, I will update when/if we recieve more information or other appointments.


"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."