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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, June 1, 2011

Lilly's musical accomplishment

Weight check = 10 lbs. 14 oz.

Last night Lilly was sitting in her bouncy seat on our table as we ate dinner. She was flinging her left arm around and ended up wacking the turtle that was hanging down in front of her. Then she got her fingers hooked into the frog. She pulled it and it played music.

We all thought that was a pretty neat chance happening. But then she did it again! And this time we saw her cock her eyes towards the frog as she reached towards it and clumsily hooked her fingers! She did this several times and we all clapped and cheered each time. It was amazingly exciting knowing that this was a huge accomplishment for Lilly!


After she tired herself out, she got to celebrate by drinking homemade chicken broth through the soft dropper she likes. (Thanks C for the tip!) Lilly seemed to really like it. I made it from organic chicken bones and feet. (Yuck! That was my first dealing with chicken feet!)


I've been hooking Lilly up to the pulse ox while she naps. She's been doing great lately. Not setting it off at all. I look forward to telling her pulmonologist Friday. Maybe we can cut out the wee bit of oxygen at night soon. By the way, I have finally found something that keeps the cannula stuck to her face and is gentle on her skin (thanks cousin M). It is this product by Neotech: http://neotechproducts.com/mini-ezhold-cannula-tube-holder-p-72.html (Tip: You can get free samples from the company in different sizes to try.) The cannula still pops out of Lilly's tiny nose though if she rubs her head on the bed enough. But overall, we're having more success with it staying in all night.

It's so neat knowing that God knew that Lilly would first pull that frog purposely yesterday before He even created her:


"My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." - Psalm 15-16

12 comments:

  1. Yea, Lilly! Why couldn't you have done that trick when I was there? That must have been so EXCITING for everyone to realize you grabbed your turtle on purpose. Hopefully, she liked the applause and will continue to perform.

    Lisa, Did you actually have to mess with Chicken feet? That is too funny.
    Shisshy

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  2. Your sweet girl continues to amaze! God is so good! Hard to imagine how excited you must have been.

    Good job, Lilly!

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  3. Glad they work. Josie Duggar used them. I remember seeing them on the show. I just had to find them.

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  4. Oh Lilly!

    You made a delightful accomplishment!

    Love,
    T.

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  5. Wow! that is so exciting! I'm glad the borth idea was useful. Love to you all!

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  6. Yeh Lilly, well done:-)
    When you keep practicing you will be able to go to the gym soon and then you can impress all those Arnold Schwarzeneggers!!

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  7. good job little granddaughter!

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  8. Good girl! What a great accomplishment! Can't wait to see for myself. :)

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  9. Hallelujah...we pray she continues to do well with sleeping...goodbye oxygen (thanking Him for it now). There's a lot more going on in there than most people think...keep showing 'em Lilly.

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  10. Yay, Lilly! We are so proud of you!

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  11. Each moment you have with Lilly is a blessing. You have strength, courage and faith that blesses others. Keep going, Lilly! We are inspired by your entire family.

    The W-H's

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