Sadie
This is a story about my daughter with a rare chromosome disorder. Our life, our experience, our history. Sadie 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 this summer changed her karotype to deletion 8p23.2 with extra xp 22.12, essentially meaning more missing chromo 8 and more added xp)
Thursday, February 16, 2012
IEP meeting today
Today was another IEP meeting to discuss changing Sadie's label prior to her 7th birthday. In the summer of 2007, Sadie was found eligible for special education services and was labeled developmentally delayed. In our school district, children must have a label change by their 7th birthday to Intellectual Disability, Other Health Impaired, Developmental Disability, etc. All of that requires some or all of the following, updated social history, psychological evaluation (IQ), adaptive/behavior, etc. We strongly feel at this point, we are not ready to "label" her ID, because we have many concerns with the implications of her IQ being in her record. Let me ask you a question, would you want your child's teacher or other teachers to know their IQ? Do you think it would affect how they are treated or educated? Do you want anyone to know your IQ? Would you post it on facebook?
Wednesday, February 15, 2012
Tuesday, February 7, 2012
Reminds me when she first got baby teeth
Heehee... Sadie has 3 adult front teeth and 2 adult molars and 8 baby molars left in her mouth. As strange as her teeth look now, I think they are beautiful and so much better than all the super crowded 8 teeth that were there.
I spoke to the cardiologist today and her ASD hole is still 4mm and VSD hole is a few mm. He said not large enough to repair in surgery. However he was very clear that she should have a follow up EKG and echo on her heart in 9-12 months. Should be done under sedation again too. Ugh. But good news none the less that se doesn't need surgery. Yay!!!!
I spoke to the cardiologist today and her ASD hole is still 4mm and VSD hole is a few mm. He said not large enough to repair in surgery. However he was very clear that she should have a follow up EKG and echo on her heart in 9-12 months. Should be done under sedation again too. Ugh. But good news none the less that se doesn't need surgery. Yay!!!!
"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" ~ Albert Einstein
Sent from my iPhone
Monday, February 6, 2012
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