Yesterdays 'test' message was a mobile test from my phone. So cool that I can send blogger a text and it will post to sadies blog.
Some new things with Sadie...she signed her own variation of shoes a few days ago. We watch signing time a lot. So after seeing the song segment on shoes, I asked her to sign shoes. It was so sweet. We just need her to functionally learn and use milk, water, eat. On a positive side, we've been using the one picture switch and she really seems to be picking up on the idea of pushing the milk picture and hearing it say "milk."
She has been very clingy lately leaving me feeling like a mama monkey at the end of the day. Her arms wrapped around my neck and her legs gripping my hips, she doesn't give me a second alone. I increasingly feel guilty as I see Shelbi fight for her own place. Which is why I let her stay up later, she has been harder to get to sleep because I love to cuddle and read to her when Sadie is already in bed. I often wonder how Shelbi will be shaped by her sister's disability.
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...