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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

Friday, December 13, 2013

Day 15 - Remembering Lilly - September 2011

This is my 15th 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.

September 4, 2011 - October, 3, 2011

  At 14th months old, Lilly had an ultrasound done of her kidneys.  (T-18 children often have kidney issues.)  Lilly's kidneys were just fine!

She also had a heart catherization done to check the pressures on her heart.  It went smoothly and she came out of the anethesia easily as usual.  (I've heard a lot of doctors think T-18 children can't tolerate anethesia and will die.  Lilly never had any problems nor have any other of the T-18 children I know of.)

While at the hospital, Lilly received a beautiful Lilly-colored quilt from the genetic counselor who we first learned about Trisomy 18 from.  This sweet woman kept up with Lilly through my blog.  Here's Lilly posing with the quilt behind her:

Lilly was finally big enough for size 9 month clothing.  She couldn't wear one piece outfits though - they had to be g-tube friendly.  I had started giving her bolus feeds during the day, and continuous feeds at night.  Because she was small and had a tiny stomach, I fed her small amounts (by bolus) about every hour to hour and a half during the day.  I had started the blenderized diet off with pureed avocado in chicken broth.  She did great!

(If you are interested in trying a blenderized diet for your g-tube fed child, I highly recommend the Homemade Blended Formula Handbook available from )

Lilly had a lot of fun playing with beans in occupational therapy.  We'd often find them still clutched in her hands after we thought we had gotten them all.

feet in the beans

This month Lilly began to lift her head a lot more.  She also had another cold, which we dealt with by using the nebulizer and saline spray and suction.

I'm going to get you you irritating can of saline spray!
I'm going to get you too Mr. Turtle mask!
A few more photos from the month:

Don't you wish you had hair that naturally stuck up?

sweet baby

"The Lord has done great things for us, and we are filled with joy." - Psalm 126:3

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