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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

Thursday, April 28, 2011

The Chub-Factor

Weight check = 10 lbs. 8 oz. !!
Height = 23 inches

Lilly had an appointment with her pediatrician today. She in the "less than 3 percent" percentile for height and weight. But her doctor said for children with genetic problems, like Downs Syndrome, Lilly is actually in the 25th percentile. Sounds good to me!

Lilly still has a lot of extra congestion and a bit of a cough. But her lungs sounded clear. So I am hoping it's just allergies. She did seem to feel a bit better today.

The doctor was tickled by Lilly's chubby arms and legs. Especially the cellulite on her thighs. My personal favorite is the roll of fat across both of Lilly's knees. (2nd picture)

After the doctor, Lilly and her siblings got to visit daddy at work. This was mainly to show my 2-year old that yes, daddy does go somewhere every day and works. We got to peek in at his Uncle P. who works at the same place which was fun. I had Lilly in a wrap on me to help keep germs off her. Most people peek at her at a respectful distance. It was fun - it was sort of like having a celebrity with me.

Lilly got to take a leisurely bath when we got home. She enjoyed stretching on the bed afterwards. She has been trying to lift her head lately. She can lift her chin up and part of her head - but the top of her head is still too heavy. I also changed her NG tube for hopefully the last time EVER! I just can't wait to be able to see her entire face without tape and no longer be chained to a pump. I know that how I feel must be minor compared to how Lilly will feel when that thing is finally out of her for good.

My husband learned today that we can set up Lilly's echo in S.C. for one day and then have Lilly's VSD repair surgery lined up for the following day. (Assuming they don't find anything that makes them change their minds of course.) We are both thrilled about it. My husband is going to call the surgeon tomorrow and see when we might schedule it for.

"Glory be to God! By His mighty power at work in us, He is able to accomplish infinitely more than we would ever have to ask or hope!" - Ephesians 3:20

6 comments:

  1. Okay, my darling niece/little sis.
    No more griping about Lilly's NG tube. Instead, embrace and kiss it for being the vehichle that put that fat and cellulite on her. OH HOW I LAUGHED OUT LOUD when I saw those pictures! She looks so happy!
    Wish Ole NL could pinch that fat!

    Love,
    Shisshy

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  2. My daughter told me she saw Lilly today - she was excited! I hope she was not one who got too close! So great to see the fat on Lilly! Continuing to pray for her.

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  3. I looked at this picture of her chubby legs again today and they are so fat that it is almost OBSCENE!

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  4. God doesnt give a crap about anything for the simple fact that he doesnt exist. But sheeple feel more comfy believing in imaginary friends. The proof that there is no moron up there in the sky is ur poor daughter herself. U condemned her to life, shame on u!

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  5. "Anonymous,"
    you claim that God doesn't exist, but that is just a silly statement based on blind faith.

    For someone to know that there is no God, he would have to be all knowing. But if he is all-knowing, he would have to be God, for only God can be all-knowing. Thus saying that there is no God is self-refuting--for such a statement says all knowingly that no being is all-knowing.

    The fact of the matter is that you do believe in God (Romans 1), but you suppress that truth in righteousness.

    As for your imaginary friend argument, well, I can't see you, so maybe I should assume you don't exist.

    In your "shame on u" statement, you imply that it is immoral for letting Lilly live. But in your silly, materialistic worldview, there is no morality--morality, after all, is immaterial.

    And so you see, your atheistic worldview is utterly irrational--you claim there is no God, but assume yourself to be God in the process; and you assume morality, but atheism, by the nature of the case, denies morality.

    Atheism is thus mythological, a crutch for those who want to justify their rebellion against God.

    You might want to apologize to Lily and her family--and most of all, repent before the Almighty God. God doesn't believe in atheists, but sends unrepentant atheists to eternal hellfire.

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