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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

Saturday, April 23, 2011

Uniform violation!


I've been keeping Lilly hooked up to the pulse ox during naps. Her numbers have been dropping into the upper 80s some so we're hooking up to oxygen at night. That half liter puts her level at 99-100.

Putting on the cannula is still making it much harder for Lilly to settle down at night. Rats! Just when I think I can get a bit more sleep.

Two nights ago, I put a hat on Lilly so I could cinch the cannula tighter. The cannula actually stayed on that night though the hat was off by morning. Sneaky Lilly's latest talent! Last night I tried taping the cannula to Lilly's hat. Everything was still in place when I woke at 3:20 a.m. to peek at her. But both were off when we got up this morning. We'll get it figured out I guess. (Several have suggested a mask - but it won't work with her sleeping position.)


(Last picture) Lilly's daddy works at a private Christian school that has rules for dress, hair, etc. To me that makes Lilly's wild hair extra funny. She has crazy cowlicks on top which push her hair up into a natural mohawk. Punk rockers - be jealous! It's all natural ... I think it's so cute and think God's sense of humor comes out in how He designed Lilly's hair.


[Jesus speaking] "But the very hairs of your head are all numbered." - Matthew 10:30

3 comments:

  1. She is a true original :) Love to all of you!

    Michele

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  2. Awww..she looks great! :( shes gorgeous!

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  3. I thought you couldn't cinch it?!

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