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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

Monday, December 13, 2010

The happy seat



Weight check = 7 lbs. 4.5 ozs.

A couple things make Lilly consistently smile. The first is her daddy. The second is being in her bouncy seat. Hanging over her seat on an arch is a stuffed snail, turtle, and musical frog. Whenever we put her in this seat she just starts smiling.

This is so exciting to me because I can see the recognition in her eyes when she sees the hanging animals. And since we don't know exactly what's going on in her brain, it's a great sign.

When Lilly was in the hospital in Florida, I spoke by phone to a local woman that was pregnant with a trisomy 18 baby. Today I learned that she lost the baby in utero. News like that is so sobering. There is always the sorrow when a baby dies. But how do you process it when it's a baby that the medical profession has said is "incompatible with life?" Is it a bit of relief mingled with sorrow? Or does it make it all the more sad? Life can be so confusing.

It made me so grateful once again that Lilly is alive and doing so well.

For My thoughts are not your thoughts, Nor are your ways My ways,” says the LORD. “For as the heavens are higher than the earth, So are My ways higher than your ways, And My thoughts than your thoughts. " Isaiah 55:8-9

12 comments:

  1. LOVE seeing that smile!!!

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  2. And Lilly, you have gained more weight! Clever girl. xx

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  3. Wow, Lily is doing so well! You should know that it is not unheard of that amnio and blood work will reveal FULL trisomy 18, but skin biopsy reveals mosaic. This is significant because the skin cell line is related to the brain cell line. Nice to see that weight creep up!!

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  4. TO ANONYMOUS: i would love to hear more about this! what would it mean for lilly if she were indeed mosaic?

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  5. your a quarter of the way to 8 now lilly!!!! wahooo!!!! love the smile:)

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  6. Lilly, if you died I would NEVER be the same person. But you are doing so well.

    Your first person to smile at was me! :)

    Love,
    Tabby

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  7. I just love seeing the Father at work! Oh how we underestimate! Glory to Him! I have to wonder if He isn't sitting on His throne saying, "You ain't seen nothin' yet." Of course, He probably doesn't use Southern slang, but I like to think He does. Always in our prayers!

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  8. These are the best pictures! It is fantastic to see that she recognizes isn't it? How exciting:)

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  9. Thank-you for the updates!
    Today I was much blessed as Jim showed me the latest pic on Lilly. Yesterday was my b-day and to see this precious lil girl's face smile and beam was a gift so special to me.
    Continue to pray for her strength and weight gain. I love this girl and I love Mr.Jim and his faith! Blessings to you all...

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  10. I think The Father is smiling too when he looks at Lilly. How can he not seeing this beautiful happy girl:-)

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  11. I think that IS the FATHER smiling in Lilly's face.
    He is reminding us what He can do if we have the faith as small as a mustard seed.
    How Excellent is Your Name, O, Lord!

    Thanks to all who keep a watch and prayer on our Lilly. She is a miracle in constant action. I think her mom may be, too.

    From Mom's Aunt

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