Waverly's Journey: April 2014

Saturday, April 12, 2014

Build-A-Bear

At Christmas time, a sweet friend gave our family a gift certificate to Build-A-Bear. We were finally able to go last week and use it. The kids had a BLAST! They loved helping Waverly with hers. Afterwards, we all went out to eat at Cheddars. As we were enjoying dinner, Johnny and I realized we couldn't remember the last time we did something like that all together as a family. It was such a special evening. Enjoy some pictures from their special time out.

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!

Waverly's Journey

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Friday, April 25, 2014

Happy Easter!

Saturday, April 12, 2014

Build-A-Bear