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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, December 7, 2011

Urgent prayers needed! Lilly is sick. Again.



Today's picture - Lilly waiting for a chest x-ray. Turned out she had good reason to look a bit annoyed! They had to re-do it a second time because their computers wouldn't send the images to the pulmonogist. That made Lilly MAD!


After listening to Lilly's chest and lungs this afternoon, Dr. H, Lilly's pulmonologist, ordered an x-ray. I was sad to see the results. There is a large white mass behind her heart. Dr. H said it probably started out viral, but has consolidated. Perhaps bacterial.


She said to start Lilly on the antibiotic that we had a prescription for, do several nebulizer treatments a day, and lots of back patting to help loosen the gunk. She was pretty amazed that Lilly didn't have a fever and was so happy, smiling and chatting.


Dr. H said she felt "very protective of her children" and asked if I would like her to have Lilly admitted to the hospital right away. She is concerned about Lilly's record. How things come on fast all at once.


I thought about it but declined. I promised we would continue to monitor with the pulse ox and if her levels dropped or her breathing got bad again, then we would take her right in.


It's a hard decision. Very hard. We've certainly had a number of scares with Lilly. But right now, in spite of being so sick, she is happy. (She's in my lap right now grinning at me!) And she is sleeping normally. If she were in the hospital, she would be very agitated at staying in bed with all the monitors on and she would have her sleep frequently interrupted. (Sleep is important for healing!)


So - we'd rather her have a better quality of life right now at home. And we're praying like crazy that this pnemonia - or whatever it is! - will clear up quickly and Lilly can just work through it safely staying home.


Please pray that with us. And THANK YOU! We are so grateful!


“For with God nothing will be impossible.” -Luke 1:37


“'For I will restore health to you and heal you of your wounds,' says the Lord." - Jeremiah 30:17

6 comments:

  1. Carol In New ZealandDecember 7, 2011 at 9:08 PM

    I am with you all in spirit. Much love. Much, much love.

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  2. Keep smiling little Lilly!! xxoo Ninny loves you!

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  3. I just saw your e-mail, and I'm sending some up right now! God bless you all! LOVEc

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  4. OH, Goodness! You all are such warriors! Prayers being lifted.

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  5. Sending love and prayers.

    Amanda

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