Waverly's Journey: Waverly Ann

Sunday, May 15, 2011

Waverly Ann

Waverly Ann
Sunday, May 8
6:23a.m.
5lbs 5.4oz
18.75inches

3 comments:

ElizabethMay 16, 2011 at 11:25 PM
She is absolutely beautiful. Way to go Johnny :)
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AnonymousMay 19, 2011 at 9:36 PM
She is so precious!
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debdregerMay 28, 2011 at 3:01 AM
So Beautiful...So Precious
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About Waverly

Waverly was born on May 8, 2011. When she was two days old, we were told she had Lissencephaly, which means "smooth brain". Normally the brain has many grooves, but in Lissencephaly, the brain is smooth and therefore there is less brain matter. When she was ten days old, we found out it was due to a rare genetic disorder called Miller-Dieker Syndrome (MDS). MDS is a deletion on the 17th chromosome characterized by Lissencephaly, which causes severe intellectual and developmental delays, seizures, low muscle tone, muscle stiffness (cerebral palsy), feeding difficulties, and a shortened life expectancy (infancy to early childhood). Waverly has a feeding tube (g-tube), a baby mullet, and an amazing way of causing people to ooh and ahh. She loves to suck on her paci, to watch her big sister and brother, and be held by anybody and everybody. She is our special gift from the Lord!

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Sunday, May 15, 2011

Waverly Ann

3 comments: