School is going great and everyone is impressed with Sadie's ability to sit for longer periods of time. She has gone back to her old eating habits...barely eating. We took her off the periactin for a short break because of the sleepy/grumpy side effects. Sadie's geneticist said that was fine. Usually people are on it for 2-3 weeks and then off again for a week or two. I feel my stress level going up again though worrying about her weight. She gained about 1 1/2 pounds during the 3 weeks that she was on the medication. But being back in school has brought the stomach bug to our house. Shelbi and I caught it a few days later. Sadie and Shelbi's stomach bug wasn't as bad as mine, they are both on children's probiotics, so I think that helped them. Sadly, I'm pretty sure Sadie lost most of what she gained. She will start the periactin again this week.
Other than the stomach bug, everything is the same around here. Chasing Sadie around the house to keep her out of trouble and Shelbi is following suit and helping me. Taking and picking Sadie up from school hasn't been that challenging. Maybe I'm just getting used to it?! Daddy's been helping take on Tuesday and Thursday. Thanks Daddy!
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...