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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

Thursday, December 12, 2013

Day 14 - Remembering Lilly - August 2011

This is my 14th 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.

August 4, 2011 - September 3, 2011

My favorite Lilly accomplishment from her 13th month was that she learned to laugh.  We so enjoyed getting her to giggle or do a good belly laugh.  Sadly, after she had her second heart surgery two months later (Nov.) she never laughed again.  I feel confident though, if she did, that she would have learned to again.  (Something I noticed with Lilly, that other parents of T-18 children have told me happens with their kids too, is that after a major sickness, surgery, or hospitalization, their child seems to "forget" how to do some things for awhile.  But eventually the skill comes back.)

Lilly started occupational therapy.  It was once a week, at our home.  She continued her physical therapy.  She loved them both and worked hard.  The first thing the occupational therapist did was to order little hand splints for Lilly.  Lilly wore them at night to train her hands to stay open more.  I called them her "boxing gloves."

 One tip I have for other parents of medically challenged children is to keep a 3-ring binder of their medical records and your notes.  Lilly's was a 3-inch binder that weighed over 7 pounds!  It was such a help.  I took it with us to appointments and to the emergency room - so helpful for everyone involved in her care.  Even the nurses could look things up for themselves in it.

Lilly took her first boat ride when we joined one of Frank's friends on his boat.  Here she is using her Jedi mind powers to drive the boat:

I was able to purchase a refurbished Vitamix blender through a special discount program the company has for people who receive food through their g-tube.  I was excited to start blenderizing food for her, to feed her through her g-tube.

Finally, we also added a nebulizer to Lilly's collection of medical equipment.  She had a cold this month, and the nebulizer treatments really helped her through it.  I thought the turtle mask was cute, but Lilly was not impressed.

Just a few more pictures to wrap up Lilly's 13th month:

"A cheerful heart is good medicine . . ." - Proverbs 17:22


  1. Thank you for sharing your daughter with the world. I stumbled upon your blog by accident and am so glad I did. Lilly has the face of an angel. I cannot imagine how you miss her. Thank you again for bravely sharing. Her stories have touched my soul.

    1. Thank you for your kind words. Your comment means so much to me! God bless you!