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
Tuesday, November 25, 2008
Countdown to Tomorrow Morning's EEG
Sadie is having an EEG at the children's hospital tomorrow morning to see if she is having absence seizures (3-5 second staring spells). She has to stay up until midnight tonight and get up at 6am. She has to be tired for the test and take a short nap during the test. This will be her second EEG. The first was done when she was 14 months old following a febrile seizure. They hook about 20 wires to her scalp with glue to measure her brain waves. She will be strapped to a bed and we hope she will fall asleep for at least 10 minutes of the test.
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...