Waverly's Journey: A Real Conversation

Friday, March 15, 2013

A Real Conversation

K (6 years old): "You should stay home with Waverly tomorrow cuz you know all that medical stuff."
Me: "But daddy knows how to take care of her too."
K: "Yeah, but he forgets to go to CVS."

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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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Friday, March 15, 2013

A Real Conversation

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