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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

Wednesday, August 24, 2011

Heart catherization postponed




Lilly is still having some extra congestion so her cardiologist thought it best we postpone her heart cath. He is concerned about the additional risk since she will have to have anesthesia. The lab is supposed to call me back tomorrow with a new day and time.


I admit I'm disappointed because I just want to get all this heart stuff done asap before she gets really sick from something. But I certainly don't want to take any chances. I keep thinking about the little boy Caleb, who I mentioned in my last post, who has since had several more heart attacks. So perhaps God allowing Lilly to have this cold right now prevented something worse from happening.


"I waited patiently for the LORD; he turned to me and heard my cry." - Psalm 40:1


Lilly had occupational therapy yesterday. The therapist commented several times that Lilly is such a hard worker and doesn't whine like some of the other children she works with. As she moved Lilly through different positions, she noted how much stronger she has gotten, just in the past few weeks she has worked with her. She said Lilly's body wants to crawl and roll over. But that she can't because she doesn't have the neck strength to pick up her head.


On a completely different note, Lilly experienced her first earthquake yesterday! Only the disappointing thing is - I didn't even notice and I doubt she did either. At the time of it we were sitting at the kitchen table and I was giving her a nebulizer treatment. The machine is very loud and vibrates the table. Plus Lilly was MAD about the treatment and was crying and squirming about. I was so focused on her I didn't notice anything unusual.

3 comments:

  1. The therapist commented several times that Lilly is such a hard worker and doesn't whine like some of the other children she works with.

    I LOVE THIS! HA HA....YOU GO MISS LILLY. YOU ARE A HARD WORKER LIKE YOUR MAMA AND DADDY. GOOD GENES INDEED.

    SHISSHY

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  2. lilly,
    love this picture of you!
    keep up the good work and the sky is the limit!
    love,
    mah mah

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  3. I noticed it!!! I just thought it was the air conditioning but then there was vibration!!!

    ReplyDelete