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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, May 25, 2011

Better days

Weight check = 10 lbs. 9 ozs.

Life has been extra busy since we've been home from the hospital. I feel like I'm still trying to get unburied. (I have a bunch of e-mails that I haven't had time to answer, but I promise I'll get caught up soon!) But it is good. Lilly is feeling very well and is happy and smiling a lot. She didn't talk at first but that has come back in the last couple days.

We have noticed what a big difference it is making in Lilly's congestion by not having the NG tube in her nose anymore. There are many days now where I don't have to use the Nose Frieda (suction) on her at all. She's also started sneezing some (she never used to for some reason) and it's pretty funny to watch. She will scrunch up her whole face, then turn beet red, then out comes a quick little sneeze.

I gave Lilly a little yogurt to try yesterday and she ate it pretty well. She seemed to like the consistency.

The other day I walked into the room where Lilly's pulse ox is and found my 2.5 year old son sitting there with it. He had plugged it in, turned it on, and hooked the sensor up to himself! All this medical stuff is completely normal to him.

If you are a fan of pug dogs, look close at Lilly's onsie. It says "pugcake." That was a gift from Lilly's aunt that has a pug and all sorts of pug paraphernalia.

"Lord, you are our Father. We are the clay and you are the potter. We are all formed by your hand . . . look on us, we pray, and see that we are your people." - Isaiah 64:8-9

4 comments:

  1. So glad Lilly is happy. Don't worry about my e-mail at least. I'm glad she liked the yogurt too. I know that will be so good for her. I've been meaning to suggest, though I'm sure you've thought of it already, some homemade chicken bone broth might be a good idea for her too.

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  2. One of the funniest things I have ever seen is Lilly sneezing! I think that the "'ol bad guy" was so earritating to her throat and it was so painful that she coughed insted of sneezing.

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  3. i'm sure being with her big sister again is making lilly very happy!

    :-)

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  4. Glad to hear she's doing well!!

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