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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

Thursday, March 10, 2011

First try with solid food

Weight check = 8 lbs. 13.5 ozs.

Today I fed Lilly a few bites of rice cereal. She wasn't repulsed, but didn't seem to love it either. I do think she found it interesting having that food in her mouth and pushing it around with her tongue.

Yesterday we went to visit Lilly's Pop in the hospital. Still not a lot of change since his stroke, a little over 3 weeks ago. But he again reached for Lilly and then when we were leaving he nodded at my husband. That was so good to see. Please keep praying for him!

This morning we got a call from the nurse at the cardiologist's office in Florida, where Lilly will have to go for her open heart surgery. The nurse said they would discuss Lilly's case today and then if they decide she should have surgery soon, they would bring her case to the surgeon next week. And then he would make the final decision. Honestly that wasn't quite the answer I was expecting. After further thought I decided that the nurse must not have read Lilly's file and just was following standard procedure. So ... Lord willing we'll get an answer next week.

Lilly's new face tape is working better. That is, it is not messing up the skin on her face like the Tegaderm tape did. I cut a thin bit of a DuoDerm pad and put that on her cheek where the NG tube will go across. Then cover everything with Medipore tape. (This tape is more cloth-like and "breathable.")

Lately my son has been going around with only one sock on and calling himself "sneaky Lilly."

Lilly has been a bit cranky and fussy this afternoon and evening. That makes me feel extra tired for some reason. But still, it was a good day. Lilly is with us and doing well. :)

"Not to us, LORD, not to us but to your name be the glory, because of your love and faithfulness." - Psalm 115:1


  1. Lilly, keep trying the solid food - you'll eventually love it! Continuing to pray for Lilly's Pop - love the purple dress!

  2. Hi, I'm so glad to see her doing so well. This is really great!

  3. she looks good in that color.

    Now about big brother. His legs look so LONG!


  4. You are such a good mommy. The Lord is truly using you to minister to others!

  5. Love the pictures and how Hunter is being like ''sneaky Lilly".
    Glad you all had another visit with Lilly's Pop and that he responded some by reaching to Lilly and nodding at Frank! Some times even when we are physically disabled we are still present within - listening and watching.
    May the Lord continue to watch over Pop and provide him with the spiritual strength he needs,to comfort him!
    Blessings to you all!