Forgive me...I'm still trying to catch up on the blog.
Three weeks ago, Sadie was "fitted" for her new AFOs (braces for feet). When I say "fitted," I mean casted toe to knee and immediately having the cast cut off. The purpose is to have the AFO fitted specifically for her feet. I guess this makes sense...to me, but to a 3 1/2 year old...NO WAY. It wasn't nearly the worst thing to have done, but it makes the list.
Either way it had to be done. We picked up her AFOs from the therapist on Tuesday. Imagine trying to put a wet pair of jeans on an uncooperative child. We finally got them on, kicking and all.
She still only wears them at night to prevent recurrence of the tendon tightening.
By the way, they cost approximately $1200 and insurance only covers 80%. I guess that's better than nothing.
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
Time is a Thief
I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't post...
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and the flu panic begins... http://www.cloroxclassrooms.com/downloads/teacher_brochure.pdf
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Sadie has been having spasm type clinch arm and mouth type movements that last about 2 seconds randomly starting in June. For the past mont...
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Today I was feeling the need to read other stories about other children with chromosome disorders. I googled blogspot to see if I could find...