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

Wednesday, May 30, 2012

Yogurt

Caught with a tub of yogurt when I wasn't looking for 60 seconds. Ha

Friday, May 25, 2012

Sadie has strep again

Friday, May 18, 2012

when I'm 7

In our normal routine, the girls played on the swing set last evening before dinner. Because of muddy feet and knees, the girls took a bath together.

These days, I've encouraged Shelbi to bathe alone so that both girls can have some privacy separate from each other. Tonight was different simply because they both had muddy feet.

After their bath, I was getting Sadie dressed and I didn't realize it, but Shelbi was watching me. She was already quickly dressed. Sadie must have been making her normal vocalizations. Shelbi asked, "Mommy, when I'm 7, will I be like Sadie."

Taken back, I said, "Baby girl, what do you mean, will I be like Sadie?" She said, "Will I start saying, 'babababa?"

I hugged her after that and tried to reassure her that she didn't have a disability, and that she would be able to talk when she turns 7.

Trying to explain that to a four year old is tough, but feeling it as I'm explaining it, reminds me that Shelbi is every bit, living this life, as I am.