Today we saw a lot more of these baby blues!
We did a lot of hanging out today.
We are in the hurry up and wait mode, waiting to hear back from the two GI docs who are reviewing the results of Lucy's most recent MRCP to make any decisions about what we'll do next.
Unlike the past few weeks, Lucy struggled to find sleep today. We are weaning her down on some of her dilaudid which is making her nervous system a bit jumpy. She is hypersensitive to everything, the slightest noise seemed to wake her...
thus making her a wee bit more irritable than her norm. I'm so not complaining though as I was begging God this time last week for any opportunity to see my girl again. We describe Lucy as being mostly irritable and sometimes happy, that is exactly what she was today :).
We had art therapy this morning. Lucy wanted to cut paper, seriously. Her vision is not great and neither are her cutting skills, but we managed. By managed I mean we did this all before Dr. R saw her blindly cutting paper. We hung her artwork on her door for all to admire.
Daddy came to see us today, as well as some friends from church, and the ultrasound tech who was not a welcome sight.
I feel like I spent the entire day trying to get Lucy to sleep soundly.
She finally succumbed to sleep just before eight o'clock tonight.
Good night sweet girl, see you in the (not so early) morning, not before I see you in my dreams.
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So glad to hear she was a little more alert today!!! Lucy SO reminds me of my Reagan! For the first several years of her life she was mainly fussy. She's super hyper sensitive...I have a sign I put on our front door so no one will knock and wake her!! Lucy is in my constant thoughts and prayers!!!
Thanks so much for the update. You all are constantly on my mind. So glad that Lucy is being a little more of her spunky self! Still praying and believing for all of you. Stay strong sweet Lucy!
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