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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

Tuesday, May 17, 2011

Happy Lilly returns

"Up all night ... sleep all day ..." If you were in your teens or twenties in the early 90's you may recognize that chorus from a song by the heavy metal group Slaughter. It went through my mind over and over last night. After all Lilly's sweet snuggling and sleeping on me all day, she decided she didn't need to sleep last night. And it wasn't just that she wasn't going to sleep she was going to be downright annoyed about it. So I was up with her until 3:00 a.m. when I finally started feeling nauseous from lack of sleep. So I went to bed. Soon after she was up again and my husband got up with her. Lilly finally feel asleep in the early morning hours when it was time for us to get up.

She slept until early afternoon. And then awoke full of smiles. Her oxygen was turned off and stayed off all day until she started falling asleep a little while ago. The doctor today wanted to keep her today to observe her breathing without oxygen. All went great. So ... we just may be leaving here tomorrow! I'm really hoping so but trying not to get my heart set on it.

"How do you know what will happen tomorrow? For your life is like a morning fog - here a little while, then it's gone. What you ought to say is, 'If the Lord wants us to, we will live and do this or that.'" - James 4:14-15

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