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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, January 17, 2011

Next size please!!



Lilly would rather chew on her knuckles than play piano. :)

I am very excited that Lilly is "graduating" from preemie sized diapers to newborn size! Yes her legs are finally getting enough chunk on them. You can't tell in these pictures, but if she were next to a "normal" baby, you would be able to see just how narrow Lilly is. (Small head, tiny shoulders - just plain narrow!) So seeing chunkiness appear on her arms and legs is very exciting.


I've decided headbands are Lilly's friend. Cuteness factor aside (they make her look like a present with a bow at the top) they are proving to be really good at helping hold her tube in place.

Yesterday - right before we walked out the door for church - Lilly's NG tube slid out. It wasn't Lilly's fault though, the tape has been peeling away and I hadn't done anything about it since today was supposed to be tube changing day. We ended up taking Lilly to church without the tube and wow was that special! Getting to see her whole face without tube and tape and not being connected to anything is wonderful.


My oldest daughter loves lily flowers. (And anything that makes her think of our Lilly.) Last week she spray painted her bike green and then gave it a new name. "Lily of the valley."

"I am a rose of Sharon, a lily of the valleys." Song of Solomon 2:1

I planted some lily of the valley bulbs this fall - can't wait to see them this spring!

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