Her Rare Life

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

Sunday, November 8, 2009

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At the beach last weekend. Sadie loves to chase the sea gulls and yell baba for bird.
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I don't know why, but I love this photo.
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Tuesday, November 3, 2009

PT

Sadie did a super job bicycling down the hallways at the chkd PT office. Her first time pushing the pedals (velcroed to the pedal). She went about 60 feet!!! Sadie I'm seeing a 3 wheel bike in your future for Christmas! :)
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Sunday, November 1, 2009

Halloween 2009

Sadie dressed up as a Fairy along with her sister. We attended the Down Syndrome Halloween Party and then our neighborhbood Halloween Parade/Party. Afterwards, Daddy sat at the driveway and passed out candy. The girls went Trick or Treating with me and our neighbor Joyce. Sadie mostly hung out on the driveway with Daddy and Nanny.

Friday, October 30, 2009

Sisters

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Sunday, October 25, 2009

Implications

I'm realizing the implications...she may never read, write, have conversations...it is overwhelming to know this.
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Saturday, October 24, 2009

Baby stroller

Sadie loves to sit in the baby doll stroller.
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