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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 27, 2011

Sneaky Lilly's latest trick


This first picture shows Lilly getting a bolus feed. She still can't handle more than 1 ounce at a time, and she begins fussing during the last quarter of an ounce. I'm not sure how long it will take for her stomach to get used to it.

Lilly is still very slow with her feeds with the special bottle. She still chews the nipple instead of sucking. I've been praying for her to learn to suck again. Today she surprised me. She feel asleep at church and suddenly began making sucking noises and the mouth shape. I took a pacifier (which I give her to encourage the suck instinct) and put it in her mouth. She sucked it normally in her sleep. That sneaky little girl! Makes me wonder if she's just being stubborn about not sucking while awake! I was so encouraged that I felt like jumping up to announce what she was doing. Lord willing, before long she'll start sucking her bottle.

Yesterday we visited Lilly's Pop (her paternal grandpa) in the hospital. His recovery from the massive stroke had has been so slow. He still can't speak or do anything for himself. However we had a sweet moment when he reached out to touch Lilly. Please keep praying for him and my mother-in-law.

Lilly's sleep study is tomorrow night. Please pray that Lilly will sleep well so that the doctors conducting the test will get all the information they need. Many Trisomy 18 children seem to have sleep or obstructive apnea. Because of this, we want to have Lilly checked. But, we are praying that she does not have any sleeping issues!

"When you lie down, you will not be afraid; Yes, you will lie down and your sleep will be sweet." - Proverbs 3:24

2 comments:

  1. More Sneaky Lilly is so much fun!

    I enlarged the picture of her in her sister's lap and her little face is full and so beautiful!
    I am going to print it and frame it.

    And to think that Pop reached out for Lilly. How beautiful. Thank you, Lilly, for blessing Pop. Just think what that must have done for his heart.
    She is good medicine.

    Love,
    Shisshy

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  2. love and prayers!!!

    Michele

    ReplyDelete