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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, December 11, 2013

Day 13 - Remembering Lilly - July 2011

This is my 13th 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.

July 4, 2011 - August 3, 2011

In yesterday's post, I neglected to write about Lilly's eye exam which she had.  Her eyes were very healthy.  Though they did not "bounce" as much, both eyes didn't always work together.  She did not track things well at all.  She only tracked lit up objects.  The doctor thought that was just a developmental delay.

Little Firecracker

The biggest news this month was Lilly turned 1 year old!!  In the Trisomy 18 world that is a HUGE milestone!  Of the low number of these babies that survive birth, only 10% make it to one year old.  God was so good to let us have Lilly that long!

Lilly had several celebrations.  One was with family.  We even had out-of-town relatives come for it. 

The other party was with people we go to church with.  When I was pregnant with Lilly, I declined a baby shower since I had no idea if she would even be born alive.  When she hit one, everyone wanted to celebrate with us.

So party, party, party (which meant lots of cake!) in the days leading to her birthday!

On Lilly's actual birthday, we went to visit my father-in-law in the hospital.  Sadly it was the last time the kids and I ever saw him again alive.  When we walked in with Lilly, he gave her the biggest smile, even though he couldn't talk.  Lilly did something new - she opened her first finger and held it straight for the first time.  Something which she did a lot from this day forward.

Also during Lilly's 12th month - she had chocolate for the first time!  Frank gave her a taste of warm melted chocolate chips when we were at our friends house.  She liked it so much, I later tracked down some super healthy dark chocolate for her.  We now call that special chocolate "Lilly chocolate."  Maybe the chocolate helped her finally hit the 12 pound mark!

Lilly enjoyed the slip 'n slide and her little green inflatable pool which we called "the lily pad."

Lilly liked being in her swing.

One challenge with Lilly being on continuous feeds was that that made her a very heavy wetter.  I used cloth diapers during the day and changed her frequently.  But at night, I put a disposable diaper on her because it held more.  But she still leaked a lot.  Finally I found a solution:  add a wool diaper cover over the disposable diaper.  After that it was rare that she leaked.

Disana wool diaper cover
Another fashionable accessory I added to Lilly were "button buddies."  They were great to use with her g-tube button.

Finally, here is a little tip I learned this month of Lilly's life, if you have a child with low muscle tone that is often constipated.  (Very common with Trisomy 18 children.)  Give them a dose of Karo syrup or molasses!  It usually helped Lilly.

"However, as it is written:
'What no eye has seen, what no ear has heard, and what no human mind has conceived”—
    the things God has prepared for those who love him—'" - 1 Corinthians 2:9

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