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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

Tuesday, September 27, 2011

Therapy with Mamma


Lilly is doing well so far with her "blender diet." She handled several days with the pureed avocado with homemade organic chicken broth just fine. (Our only glitch was one time the puree made a blockage in her g-tube button. But some water pushed in with a syringe quickly got rid of it.) I use a really big syringe to slowly push in the food. She's in my lap when I feed her and I watch for any squirming or facial expression or sound of discomfort. So far so good. Yesterday we added a tablespoon of yogurt in. We'll keep that mix for a few days. (It was recently shared with me that probiotics and help prevent colds and upper respiratory infections. See here.)

Except for Fridays, when her physical therapist and occupational therapist come to our house, I try and do about 30 minutes or so of therapy with Lilly most days. I have a little notebook where I write down exercises her PT and OT do with her so I can try them with her. I have to say that therapy time is just about her favorite time of the day. (Well at least it can compete with when her daddy gets home from work. He always gets the biggest smiles from her.)

Lilly just loves the stretching and working. She loves playing with her pinto beans. (Today's last two pictures.) Last week she wanted to crawl so badly. So I put her on our wood floor, and put her flannel burp cloth under her face and hands. I put my hands behind her feet and she pushed off on them. Her legs were crawling! She doesn't have the strength to lift her head or get up on her arms. But those legs were crawling and pushing her upper body along (sliding on the burp cloth). She was grunting and went several feet across the floor before she stopped. Definitely a missed video opportunity!

When Lilly is feeling well she is truly the most joyful and content human being that I know.

"The Lord has done great things for us! We are glad!" - Psalm 126:3









5 comments:

  1. good job lilly! you sure were a happy and smiley girl monday. would love to see you crawl.
    love,
    mah mah

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  2. Prayers are being said everyday for this little cutie. I will not stop praying for her to become stronger and healthier. I also keep her family in my prayers.

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  3. love the bean photos! LOL
    The crawling description sounds so cute! I am sure you will catch it on video soon. xxoo

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  4. Dear Lilly, I love your photos and especially the one in the black and white checked dress. That is so COOL and you look so BEAUTIFUL!! You know Lilly you make me feel so happy. You try so hard and are so clever. I smile every time I read Mama's blog. Even when you aren't so well you make me smile because you are in my world.
    Love and hugs from Carol in New Zealand ((xxxx))

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  5. She does make us Smile!

    I love her Fiestiness!

    Shisshy

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