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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, November 16, 2010

Jumpers and games

Weight check = 6 lbs. 9.5 oz. (no change)

My oldest daughter deemed today "jumper day." She wanted to wear the jumper that she had made herself and wanted Lilly to match her. She was thrilled that Lilly had been given a little jumper as a gift.

In one of the comments on my last post, a pastor mentioned a premature baby that was not supposed to live. The baby lived. The baby was supposed to be severally mentally disabled. The child is 14 years old and not mentally disabled at all. He noted: "Unfortunately, many doctors do not factor in the Lord's blessings in their diagnoses." I like that. :)

"In his [God's] hand is the life of every creature and the breath of all mankind." Job 12:10

Today Lilly's milk ran out right before we left for my older daughter's piano lesson. Since it was "NG tube changing day," I decided to just detach Lilly from the pump and pull out the old NG tube. It was so freeing to just walk out of the house without the pump and gear! And so wonderful to just sit and hold her at the lesson without worrying about being careful about the tube in her nose. I inserted a new tube when we got home and praise the Lord, it went well.

This evening my husband was holding Lilly and ended up getting a little game going with her. He kept saying the same thing over and over (I don't remember what but it ended with "boo!") and every time he said "boo!" Lilly would make a noise in response. She also smiled quite a few times too, after making her noise. It was so wonderful seeing her interacting like that!


  1. Bubba always could make a baby laugh and play! :)

  2. I look at all life and wonder how people doubt the hand of God . . I look at Lilly and know His hands are at work! God bless you all for sharing these precious moments with us.

  3. Mallorie's MommyNovember 16, 2010 at 10:20 PM

    Love, love, love the fact that she is interacting. They are so much fun when that starts happening. Glad to see she could use the jumper...Maw and Honey will be happy about that. Know that being able to move about freely was a nice little break in your day. The pastor you spoke of is so right! With God, all things are possible.

  4. she is looking so normal and so healthy!

  5. love the bottom pic and so glad you got to leave the house without the pump!!!!

  6. jumper day - perfect for us homeschoolers! I love how you felt free without the burden of the feeding tube. Made me think of the burdens we all carry around with us daily - But unlike Lilly {who needs the feeding tube] we Do NOT need to carry our burdens alone! Our Lord wants to carry them for us!
    Now isn't that Freeing!
    Love to you all!

  7. Darling Lilly and my Darling Bubba!!!! How I miss all of you. :)