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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, February 23, 2011

No hands allowed

Miss Lilly was trying so hard today to get at the itchy tape on one cheek and the dry skin on the other side. I finally had to hold her arms down with the straps of her chair.

We got the sleep study scheduled today. It is set for next Monday. (Feb. 28) Lilly and I will check in at 6:30 p.m. and stay until 6:00 the next morning.

We've been working on bottle feedings this week with the special feeder. Lilly hasn't been very interested unfortunately. But I will continue trying. Whatever she doesn't finish in the Habermann after 20 minutes, I give to her in a bolus feed. I have found that this week, she can not tolerate more than one ounce that way. But we'll press on . . .

Today I talked on the phone to Caleb's mama - http://calebsjourneyfromgod.blogspot.com/ . She told me something that amazed me. She knows a little Trisomy 18 boy that at 3 years old is walking unassisted! And learning sign language. How incredibly encouraging is that?!

"Great is the LORD! He is most worthy of praise! He is to be revered above all the gods." - Psalm 96:4
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5 comments:

  1. MarshaFebruary 23, 2011 at 8:53 PM

    lilly, dearest, i was thinking the other day when you diligently, and dogmatically, went after that tape on your cheek, "my little granddaughter is a pretty smart cookie!"
    love,
    mah mah

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  2. TabbyFebruary 24, 2011 at 9:41 AM

    You ARE a little sneak, aren't you!

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  3. DarleenFebruary 24, 2011 at 11:37 AM

    This picture made me smile. I've done this to our newest foster daughter bc she kept scratching her face. She was very content once she couldn't move her arms. Love seeing Lilly.

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  4. AnonymousFebruary 24, 2011 at 9:50 PM

    I think you are all looking at this the wrong way.
    Lilly wasn't after the tape on her face. Instead she wanted to squeeze those now chubby cheeks that she is getting to see it they were for real! I don't blame her. I would like to do that myself
    Love,Shisshy

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  5. AnjaFebruary 25, 2011 at 3:51 PM

    I haven't been able to read your blog past week. Good to hear Lilly is doing so fine. I can emagine she does not like the tape and the dry skin eighter. I scratch my skin a lot too when it is dry and i can not put some normal tape on my skin, but since i use good old vaseline it helps a lot to get the itchy feeling away and my skin looks better.
    Best wishes for you Lilly and for all the dear once around you:-)

    ReplyDelete

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