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, December 3, 2009
staple removed
Sadie had her staple removed from her head November 27, 8 days after getting it put in. I got myself completely worked up about having it removed. When we went in to the exam room, I warned the nurse that Sadie would be difficult and she would cry and that she needed backup nurses to hold her down. Two other nurses came in and we looked at each other trying to get a game plan for the removal. I was holding Sadie in my lap facing me. Mary, our favorite nurse, wanted to see where the staple was. Sadie was so calm and when I lifted her hair the other nurse said quick pull it out (with the removal tool). Within 2 seconds the staple was removed before Sadie even budged. I was so relieved.
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...