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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

Monday, May 30, 2011

Happy Memorial Day!


Happy Memorial Day from squeaky clean Lilly!

We have a 96-year-old veteran that lives across the street from us. He survived the Bataan death march in World War II and was a prisoner of war for 3 years. He has many fascinating, and horrible, stories about that time. My daughter T. made him a "thank you" card today.

We continue to be tickled by Lilly's occasional sneezes. It's so strange to think that she never sneezed when she had the NG tube in her nose! I wonder if that is normal.

Lilly had physical therapy last Friday. Her therapist is working a lot to get Lilly to turn her head to the left normally. Ever since that session, Lilly has been turning her head to the left lot more on her own. Yay! I'm trying to work with her each day too, using exercises I saw the therapist do with her.

Lilly has always enjoyed looking at different shooting targets that I have printed off a free target website. Now I have pulled out some of my son's brightly colored books to show her. She is taking some what of an interest in them. Keeping her eyes focused for long doesn't seem to be easy for her. She's got her first eye doctor visit scheduled for early July.

Doctors doctors doctors ... Lilly will be seeing her pulmonologist Friday morning along with her surgeon for a g-tube follow-up. And then her physical therapist that afternoon. I'm still playing phone tag with her audiologist to see about an appointment for the complete results of her hearing tests. And next week it's back to the cardiologist. I think my daily calendar is one of the hardest working things I have in the house!

"Therefore let everyone who is godly pray to You while You may be found; surely when the mighty waters rise, they will not reach him. You are my hiding place; You will protect me from trouble and surround me with songs of deliverance." - Psalm 32:6-7

2 comments:

  1. lilly,
    you are pretty in pink!
    love,
    mah mah

    ReplyDelete
  2. Oh, Lilly! You would look soooo cute in glasses! Round, hot pink glasses! The color of your towel! I want green, rectanglular glasses! I'm so glad we get to go together to the eye doctor!

    Love,
    T.

    ReplyDelete