Her Rare Life

Our life, our experience, our history, about my daughter with a rare chromosome disorder. She is missing a small portion of her 8th chromosome, which is called a deletion. She also has a small part of XP added to that. Her karotype or diagnosis is deletion 8p23.3 with extra xp22.2 to the terminal deletion (a new chromosome test summer 2011 changed her karotype to deletion 8p23.2 with extra xp 22.12, essentially meaning more missing chromosome 8 and more added xp). #herrarelife

Thursday, April 22, 2010

Back Yard

So to sign back yard, you throw your thumb over your shoulder and then wave your flat hand parallel to the ground...back yard...well anyway, we all love spending the afternoons on the deck, playing in the sand, swinging on the swing, and just simply hanging out. We are glad to be home!
We came home from the splint clinic at 330, Sadie was fitted for Polly Wogs, (aka shoe inserts) also made by Cascade the same company that makes AFOs. Pretty neat concept, and I don't have to buy anymore cheap ones from the pharmacy! Plus insurance pays for it and that's aways a bonus!
I love sunny afternoons when it's in the low 70s.
Sent from my Verizon Wireless BlackBerry

Thursday, April 22, 2010

Back Yard

Time is a Thief