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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

Sunday, December 8, 2013

Day 10 - Remembering Lilly - April 2011

This is my 10th 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.

April 4, 2011 - May 3, 2011

Lilly's chubby little legs were standing strong as she welcomed in her 9 month birthday.  She could fully support her weight on her legs, but I still had to hold her upper half straight.  That was pretty good for a T-18 baby!

We got Lilly's last sleep study results back and they were drastically better.  She only had two slight "respiratory events" the whole night.  Because of that, her pulmonologist said Lilly should use 1/2 litre of oxygen at night while she slept.  So the oxygen supplies, along with a pulse ox, were soon delivered.

Lilly was NOT impressed with having an oxygen cannula taped to her face at night.  And it was rather tricky to keep it in place, and keep her sleeping on her side.

One of my favorite pictures of Lilly from that month:

I got a special chair off Ebay for Lilly.  It held her up well into a sitting position.  She loved seeing everything from a different view:

Lilly had a developmental evaluation for physical therapy.  Physically she was only at the level of a one month old.  But that was ok.  Lilly knew she was loved anyway!

It was a blessing to have our Easter Lilly with us for one Easter:

 "Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?” - John 11:25-26


  1. Replies
    1. Thanks Nikki! I found some sweet ones of you and Dennis holding Lilly from Jan. 2011. Oh - and the day she was born too!