caption - title

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, August 23, 2010


Weight check: 5 lbs. 1.5 ozs. :)

Lilly received a beautiful handmade bracelet as a gift. (The picture here simply does not do it justice.) And amazingly it fits her! :) The mother that makes these, a military wife of seven, does beautiful work. (My favorite idea I've seen for moms or grandmas are her bracelets where she uses birthstones of all the children or grandchildren.) This mom sells her creations at:

In this picture, Lilly is laying in a DOLL bed! My mother-in-law made this amazing wicker bed for my daughter Tabby's Kewpie dolls for her birthday.

Saturday I had a call from a woman that lives in a town not too far from us. She had a trisomy 18 daughter that lived for about 20 years. Yes that's right - about 20 years!!!! Isn't that so amazing and wonderful to consider? It was a blessing getting to talk to this woman and getting a little peek as to what life was like with their daughter for them. It gave me a lot to think about and consider, though I'm still focusing on taking the days one at a time. She gave me the name of a surgeon at hospital in Winston-Salem, N.C. that had done heart surgeries on Trisomy 18 babies. Though she did warn me that the hospital recently changed its rules on operating on T-18 babies. As have others. She believes that Obamacare is hurting T-18 babies, for a number of reasons.

My sister-in-law joined a T-18 support group on Facebook, and found someone who's T-18 niece had the heart surgery (to repair THREE holes) in Little Rock, Ark. when she was 3.5 months old. She's trying to get that surgeon's contact info. for us. Apparently you need to have a cardiologist who works in conjunction with a surgeon.

Speaking of cardiologists, Lilly has her appointment today at 2:00 with one.


  1. good job, little granddaughter! and mommy, you're doing a wonderful job too!

  2. Our Little Lilly is Beautiful in Blue.
    Especially that shade. (must have been one of her Mommy's)