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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, December 4, 2010

Happy 5 month birthday, Lilly!

Lilly is 5 months old today! I feel so much joy and relief that I feel like bursting into tears.

To make today extra special for her, God sent snow! Great big wonderful snowflakes. When it started, I grabbed Lilly, wrapped her in her quilt, and put a hat on her and dashed out the door. I've learned that where we live it can start snowing and then stop by the time you get your jacket and gloves on. Unfortunately you can't see the snow in this picture, but it was snowing. It finally started sticking after awhile but there was no accumulation.

Lilly doesn't seem to have gained any weight this week, so this morning my husband programmed the feed rate on her pump to 19 milliliters an hour. That's only an increase of one milliliter, but even tiny amounts can really upset Lilly's tummy. Lord willing, she will be able to handle this amount now. Gotta get more weight on her!


  1. Lilly, we got a light coating , glad you had snow to celebrate!!!!
    xoxoxoxox from mom

  2. I hope to maybe celebrate your 6 mo birthday with you!! maybe???!!! xxoo

  3. glad you got to see some snowflakes:)

  4. Carol in New ZealandDecember 4, 2010 at 9:21 PM

    Now that's 28 days x 5, um well that's a lot of days Lilly. And if we put that many candles on a cake, wow that would be so amazing. x x x from NZ

  5. I've always thought of snow as magical and, as you say, something extra special sent by God, especially since we live in the South. I've loved taking my children out in the snow. I loved taking my Lily out last year when we got a really big snow. Magical.
    Praying for Lilly's weight gain, Jill