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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

Wednesday, September 21, 2011

Another Bumbo baby

Weight check = 12 lbs. 8.5 oz. (Down from 13 lbs. before she got sick. Disappointing but not surprising.)

Lilly's physical therapist suggested we got a tray for the Bumbo seat we are borrowing from A.S. So now sitting in it is part of Lilly's therapy sessions. I worked with her some in it for the first time (by myself) yesterday.

In today's picture Lilly is wearing an outfit that she received from the Kwant family. The outfit had been intended for their sweet little Hannah Grace, but she decided to go live with Jesus before she fit it. And she certainly has no need for the outfit there - I'm sure she's beautiful and whole and wearing white. :) Her mama sweetly passed on a few things to Lilly, which was very touching to us.

I had to call Lilly's pediatrician with her current weight today, because she is due to start the monthly Synagis injections (RSV (virus) prevention) in 2 weeks.

I got an e-mail today from the cardiology nurse at Wolfson Children's Hospital in Florida. They are ready to review Lilly's case with the surgeon, regarding her need for VSD closure in her heart. Apparently they had planned to today, but another surgery interfered with the meeting time. So supposedly they will do so next week. We're fine waiting another week - with Lilly's cold they're surely going to want to wait awhile longer anyway. (Assuming they accept her case.)

Lilly has little remaining of her cold. I am still in awe that we didn't have to go to the hospital! That makes two colds in a row that she handled well! Thank you nebulizer and God! :)

"It is good to give thanks to the Lord, to sing praises to your name, O Most High;" - Psalm 92:1

7 comments:

  1. what a big girl you are little granddaughter!

    love,
    mah mah

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  2. Cutie pie..... Any name fits her!

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  3. She looks great and her head is so straight!!!

    Mo

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  4. So happy the cold is almost gone!

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  5. Lilly is so pretty in PINK! Hannah Grace's mommy is so sweet to share with our Lilly and it makes the outfits so special. We like special for our Lilly and appreciate the kinship with all the other T-18 angels whether still with us or playing patty cake in Heaven with Jesus. What fun that must be.

    Lilly Belle, I can't help it. I have to say it again....."You are looking more like big brother all the time...big brother AND Daddy."
    XOXOXOXO
    Shisshy

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  6. I love her facial expression! So glad she is rallying against the cold! Praise the Lord!

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  7. She's definitly a Bumbo baby! There's a Bumbo chair in every house it seems!

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