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, May 12, 2009
Plastic Surgeon
This week we see a Plastic Surgeon. The geneticist has recommended we explore having Sadie's salivation glands tied because her drooling continues to be excessive. Many days she will wear approximately 4-5 shirts. She will no longer wear a bib and truly it's not age appropriate since she's 4 years old. The main concern used to be the socially acceptable factor, but there are questions about if she might be losing too much fluid to stay hydrated. Plus family and friends accept it about her, but I'm sure other people might find drooling a little gross. I understand that! It doesn't bother me, but I don't want her to lose fluids either. We go on Thursday...I'll keep ya'll posted!
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...