Hoping for a restful night tonight and that this little bug gets out of our house quickly.
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, February 10, 2011
Sick
I'm not sure what's worse... knowing your child is getting sick by the first signs and symptoms or fearing how bad it will be. Either way, watching, anticipating, wondering how she feels, it's a sickening feeling seeing her stop eating and sleeping 3 hours in the afternoon when she never takes a nap. Or hearing the first sounds of a gag, that you know are about to turn into throw up and wonder how close I am to a bucket, the sink, or hard floor that will be easy to clean up. Because I've cleaned up throw up more times than I can count and don't event find myself repulsed by it anymore. Or worse feeling relief that your other child who is now 5 years old, can at least sit and take in the experience with some understanding, and even lends a helping hand by brushing her sister's hair out of her face.
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...
-
and the flu panic begins... http://www.cloroxclassrooms.com/downloads/teacher_brochure.pdf
-
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...
-
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...