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Thursday, March 31, 2011

Same old song and dance...

Catch up time...

We didn't get to go to Shriners on March 11th because Bailey came down with a really nasty stomach bug and it was not ideal to travel 2 1/2 hours with a toddler who couldn't stop throwing up with out anti-nausea medicine. We got re-scheduled for next Friday April 8th. Hoping to run into some AMC families while we are there and of course ALWAYS hoping for good news. :)

Bailey saw her Geneticist on March 14th for her 6 month follow-up evaluation. She thought Bailey was doing extremely well and couldn't stress enough the fact that she couldn't believe she had seen Bailey since she was in the NICU and how much progress she has made! She agreed Bailey needs to go to pre-school in August and also stated she thinks swimming lessons would be helpful and give Bailey a sense of being free! She complimented me on all I've done for Bailey and how I've become such a great advocate for her needs which was really nice! Then as I of course anticipated she had nothing more to say... other than see you in a YEAR!

I'm gonna quote her evaluation note "A number of dysmorphologists and geneticists have been involved in her care and we do not have a specific etiology for her at this time for the Arthrogryposis" Unless enrolling Bailey in Dr. Bamshad's research program is gonna give us some kind of answer(doubtful) I don't think we will ever know why Bailey is the way she is. No one in the United States has been able to tell us why our daughter was born the way she was born nor why she seems to be the only match up for her type of Arthrogryposis (according to Dr. Hall). It is frustrating to not know especially when it comes to having to explain all of this to Bailey in the future. We just simply don't know!

BUT on a positive note Bailey is BAILEY and that will NEVER change.. She has made tremendous progress in the last 2 1/2 years so an answer wouldn't have changed a thing. It's just something I have always wanted to have!

"A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." -Agatha Christie


"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."