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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, January 14, 2013

Sleeping with one eye open

One of those quirky common Trisomy 18 traits is to sleep with eyes open.  I'm not sure if some of the children have their eyes wide open, or if they are more cracked, with varying degrees, like Lilly used to do:



I was interested to learn the other day about a girl that is 12 years old, with full Trisomy 18!!!, who just had surgery to repair her corneas.  If I understood correctly, they had become damaged from being dried out so long while the girl slept with her eyes cracked open.  Her mom said the surgery was quick and easy.

Unless you have been in hiding, you know that the flu and RSV are rampant this year.  (Apparently because last winter was too mild to kill off as many germs as usual.)  Yesterday my friend H. told me that her baby had just gotten over pertussis (whopping cough) and that their doctor said that there have been more cases of pertussis this winter than since 1955.  Hmmmmm.  Makes you wonder about the vaccines.  Do be careful to keep your hands washed!  And please remind your children not to touch babies or other kids in the face.  :)

Yesterday at church, we were delighted to receive the following drawing from a 6 year old boy.  A rainbow to remind us of the gift of our rainbow baby!



"What is desirable in a person is kindness, . . ." - Proverbs 19:22

I hung it up next to Hunter's page of writing "Lilly":



The "No Time for Flash Cards" website (which has a lot of really good craft, learning, and motor skill development ideas for little ones) had a rainbow Valentine craft on today's post.  Perfect for siblings of rainbow babies.  :)  Of course I'm sure many children would enjoy it.  I'm going to get the supplies and let Hunter try it.

1 comment:

  1. Thx for sharing the website...lots of ideas for little ones here. LOVEc

    ReplyDelete