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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

Sunday, February 6, 2011

Waiting waiting waiting. And waiting.

The doctors have decided that Lilly may leave. We will take oxygen with us and she will be hooked up to it for naps and nighttime. However, being that it is Sunday, the medical supply places are closed. Soooooo ... Lilly and I will be here another day and night. Sigh ...

They will take her back off the oxygen once she wakes up this morning and just put it on during sleep, so they can monitor what it will be like at home. It's 10:20 a.m. as I type this and Lilly is STILL sleeping! She was up until midnight last night though. I'll be glad when she gets through this late night partying stage.

An old Nestle Quik commercial popped into my head this morning. It's from way back when the Nestle Quik rabbit would say (or maybe it was the kids in the ad that said this) that "patience is a virtue." (Ha! Can't imagine any "virtues" being presented in any modern ads!) Anyway, Lilly and I will continue working on that virtue of patience today.

"Now may the Lord direct your hearts into the love of God and into the patience of Christ." - 2 Thessalonians 3:5

OK I better get a mental to-do list in my head for today so that I don't get depressed. Reading mixed with exercising mixed with Bible word searches and over course holding Lilly as much as possible . . . I'm feeling more upbeat already. (Thank you so much K.S. for dropping off the word search book - I've been enjoying it!)


  1. Yay Lilly! We can't wait for you to go back home as soon as you can!

  2. Being patient - something I'm always trying to work on - that's a hard one for me too! Hope everything goes smoothly today & you'll all be home tomorrow!

  3. You are being the good example we all need to strive for, in trust, patience, love and gratitude. Thank you for allowing us to see that in you.

  4. I bet you're like a bird waiting to be freed from its cage! When J. and I were in the children's hospital it seemed like FOREVER when we would be released. Hang tight by God's grace, and I know you will relish all the more being at home with precious Lilly and the rest of your family.

  5. We are all waiting with you.... hugs.