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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

Friday, September 10, 2010

Still waiting

My husband is still waiting to hear from the chief of surgeons at Wolfson Children's Hospital in Fla. This has been a long day waiting! (I'm a planner type so waiting around can be challenging.)

Lilly's cardiologist called to check on her this afternoon and to tell me he brought her case up again to the doctors here. They again refused to do surgery because they are covinced she will not live long. (I'm praying God will prove them wrong!) I told the cardiologist about Fla. and it turns out he trained under the dr. that is to call my husband today. Pretty neat. The cardiologist said he'd work with us however we need him to help.

Been a busy day here without much to visually show for it. (Moms know what I'm talking about!) It seems that whenever I lay Lilly down, as soon as she hear my voice she starts fussing for me to come get her. Now don't get me wrong - I love to hold her! But sometimes I just need to do things that require me to move quickly with both hands free. Hmmmm ... think how convenient it would be to have 4 arms. Two to hold a baby, two to fold the laundry. Ha!

1 comment:

  1. do you have a baby sling? you could put her in that and she could sleep with you while you work? i don't suggest whistling though! :)