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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

Saturday, November 20, 2010

Tubes 'n sauce

Let me first say that my toddler has never liked pasta. So tonight when I fixed venison spaghetti (thanks again B. & A.!) I simply gave my son a bowl of meat and sauce. When he noticed my plate, he pointed and said he wanted a "tube" to try. I took me a minute but then I realized he meant the spaghetti noodles! As I looked at them, I realized that a noodle does look a lot like Lilly's NG tube.

When Lilly was four days old, we had a photographer from Now I Lay Me Down To Sleep ( ) come out to the house and take photos of our family with Lilly. (This is a wonderful free service for babies that are not expected to live.) That same photographer came back today and took pictures of us again, including a bunch of Lilly wearing some little angel wings. She looked so beautiful! I can't wait to see the pictures because this photographer does amazing work. (And the prints are the most rich colors I've ever seen.) If you live in our area and need a photographer, I highly recommend him:


  1. Lisa, thanks so much for the very nice words. Please check your email for the link of the proofs. I know you want to use some of he images for Christmas cards so wanted to turn them around as fast a possible for you!

    As always, it was a pleasure working with the entire family. Please tell Tabby that I really enjoyed the piano music!

  2. i can't wait to see all the pictures too!!!!

  3. I'm looking forward to see Lilly on a Christmascard!!
    Love the simularity tubes and pasta :-)Spagetty will never be the same;-)