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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 2, 2013

Day 4: Remembering Lilly - October 2010

This is my 4th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

October 4, 2010 - November 3, 2010

 Not long after Lilly turned 3 months old, we returned to North Carolina from the hospital in Florida.  Part of the new "getting back to normal" was to learn to carry Lilly around places along with her Kangaroo Joey feeding pump.  She was on "continuous feed" which meant she got milk 24/7.  (It was at a very slow rate.)  The pump was hooked onto a tall pole with wheels.  Or when we went outside or somewhere, we put the pump into a little backpack.

But our main concern was to maneuver Lilly safely around without catching her feeding tube on anything.  I also had to start to change her feeding tube weekly.  Sometimes it went smoothly, other times we would both be in tears.

Then one day, Lilly got a new nickname:  "Sneaky Lilly."  She developed a knack for kicking off one sock without anyone ever seeing her do it.  It made us laugh - often in amazement - and to this day when we see a child with only one sock on we think "Sneaky Lilly."

Lilly must have been playing possum here!

We were happy to be able to take her with us to the pumpkin patch:

Here Lilly is wearing a beautiful pink smocked dress with matching bonnet.  Those of you reading this that work with my husband might think it sweet to know that the dress was given to her from J.M., the Latin teacher, that sadly passed away earlier this year.

Lilly got her first cold this month but pulled through it well.  She also made it to 6 pounds by the end of the month - that was so exciting!

Hello up there!

"I lift up my eyes to the mountains— where does my help come from? My help comes from the Lord, the Maker of heaven and earth." - Psalm 121:1-2

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