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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, August 15, 2010


Lilly's weight has been 4 lbs. 14.5 ounces for several days. 5 lbs. never seemed so far away!

Lilly almost always clenches her hands and tucks her forefingers in. (So tight that the forefingers have dug into her palms.) This is very typical of Trisomy 18 babies. In fact, this was a sign in her first ultrasound that initially caused concern that she might have T-18. (Though in the womb, the pictures show that she had the forefingers crossed over the tops of the other clenched fingers. Now she tucks them into her palm.)

She will loosen her hands at times, and sometimes pop just her ring fingers straight out. (Try it! That's hard to do!) But not often. So we've decided to see what we could do to train her hands a bit. We've started putting a small cotton ball in each hand, so that it forces those forefingers and thumbs to relax their tight hold a bit. She clenches those cottonballs for hours at a time! We'll see how it works for her. (This picture shows the cottonballs in her hands as she sleeps.)