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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, October 5, 2011

We have a heart surgery date!!

We were thrilled to receive a call from Wolfson Children's Hospital (Jacksonville, Florida) today that they have accepted Lilly for heart surgery! (She has a hole in her heart (VSD) and she needs it fixed.) FINALLY! The surgeon at that hospital placed a pulmonary artery band in Lilly's heart about a year ago and we've been working towards this surgery ever since then. Pre-op is set for November 2 and if all looks good then surgery will be the morning of November 3. Average hospital stay for this procedure is about 10 days.

Now it is very important that Lilly stay healthy. No more colds or any sickness, or the surgery will be postponed. Please pray for this!

We are so thankful to God for Him bringing all this about. We will have to travel out-of-state for this surgery. So we are grateful that there are surgeons in this country that are willing to help Trisomy 18 children. There aren't a whole lot! Praise God for Wolfson Hospital and their open-minded surgeons!

I'm so excited about Lilly's surgery! A bit nervous too. But whatever God's plan is for her - we trust Him. He's already surprised us so much with Lilly's life so far and we are exceedingly grateful.

"Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." - Proverbs 3:5-6

Lilly got to do some more sightseeing today, right here in our own hometown. We took a homeschool field trip to the town's little museum, old jail, original post office, and old schoolhouse. Lilly managed to stay awake the whole time.

Here is Lilly in the little schoolhouse:


Lilly in the post office by the pot-bellied stove:


Lilly by the mail sorter in the post office:


Lilly sliding with Daddy on the (modern!) playground:


6 comments:

  1. praying you will stay well, little one.
    love,
    mah mah

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  2. YAY! Prayers that everything goes smoothly!

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  3. Prayers Little one. There will be guardian angels right there praying for you.

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  4. DOUBLE THE GOOD NEWS FOR ME!

    LOVE, SHISSHY

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  5. So precious! You are such a strong advocate for Lilly, your family is educating so many people about T18 children. Lilly is my hero! (so are you!)

    Love in Christ,

    CMWH

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  6. I didn't cry for Steve Jobs, I cried for Lilly and will be praying for her and your family.
    May the Lord bless you and Keep you.

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