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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, August 22, 2011

I think she's made it!

Today's photo credit also goes to my daughter T. She took this one a few days ago. What a big smile Lilly! As you can tell we love taking pictures of Lilly. I have thought off and on how I wish we had a special chair for pictures. Something that held Lilly upright better and especially kept her neck and head straight. We're limited in our propping places around here. But, Lord willing, one day she will learn to sit up straight on her own and hold up her head.


Lilly still has some lingering congestion from her cold. But it's only in her head. She is still acting like she feels just fine! She's smiling, talking LOUD, and playing with her toys as normal. If not for the occasional flood of green snot (!) I wouldn't think anything was different. I can't express what a relief this has been. Lilly actually handled a cold like a "normal" child! We stayed out of the emergency room, thank God. I am just so happy and relieved.



I'm thinking the nebulizer treatments really helped. (By the way - if you use Xopenex, they have a special "Breath for Less savings program" where you can get the medication discounted or for free. I am still in shock that we qualified for FREE!) Also, at night I increased her oxygen from a half liter to one liter. Did lots of saline spray and suctioning when she was awake. Lots of hard patting on her back to get phlegm loosened. And I ran my diffuser 24/7 with an essential oil mixture for colds. Also used Hylands C-Plus Cold Tablets. And of course lots and lots of prayers!



Tomorrow I am going to let her cardiologist know what's been going on in detail, so he can decide if it's still safe to proceed with the heart cath on Thursday. I'm thinking maybe not, since anesthesia is involved. But I am not a doctor.



In the meantime I am continuing to:



"Give thanks to the LORD Almighty, for the LORD is good; his love endures forever.” - Jeremiah 33:11


4 comments:

  1. I always want to call the heart cath. a Phollie cathader!

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  2. GREAT picture T!! So glad to hear Lilly is doing better!!

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  3. She looks more like Hunter and Daddy every day!!

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  4. Lilly is just the most precious little person! I keep her and your whole family in my prayers and I rejoice every time I see a new photo of Lilly's sweet face. God is good and has blessed us all beyond measure. This world is fallen and corrupt, but there is hope and God is on the throne for all eternity.

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