Gracie has had a rough couple days. She got platelets yesterday and again this morning. They want to keep her platelets above 50 because she has had blood in her vomit from the severe mucositis. she is still puking quite a bit and in pain. Most of her pain is from her raw mouth and digestive tract. (from mucositis) she also has a lot of pain in her chest by her new double lumen line. her mouth really does look like raw hamburger. Her cheeks look like a chipmunk from being so swollen and she can hardly open her mouth. She has stopped talking cause it just hurts too much. She just uses hand gestures. The doc says this is pretty well expected and it will get worse around day 7. Worse!!! Ugh. She is on a lot of morphine and pretty doped up. She continues to amaze us and all around her with her courage and perseverance. She is an angel. Please pray for her pain to be less and for her mouth to get better sooner than later. It has been a rough few days and I am so grateful my husband was here with us.
Brandon leaves tomorrow for the week and will be back Sunday. Today I slept in till 11 am at the Ronald McDonald house and then he sent me to get pampered with a new haircut and highlights. It took 5 hours! It was a much needed break and I feel refreshed to go about the next 5 days alone. I also had the chance to relax yesterday and paint a canvas at the Ronald McDonald house. It was the first time I had tried painting on canvas and it was fun. I'd love to keep trying it.
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Lisa and Brandon,
ReplyDeleteI am so sorry to hear that Gracie is in such pain. She is a valiant daughter of God and she will beat this horrid disease.
I read your one post about how she'll probably never get to carry a baby of her own, if she lives that long and I wept! My thoughts and prayers are with you guys.
Just remember that God doesn't give you anymore than you can handle. I must say I've questioned that in my life more than a few times. I know I'm horrible for doing that, but it's the truth. We might not understand all the trials we're given, but we have to remember that it makes us stronger.
I love the quote that says, "We're not human beings having a spiritual experience, we are spiritual beings having a human experience." That has brought me comfort during my trials that I've been given. I think it helps me to see the eternal perspective of things.
Please know you're in my thoughts and prayers. I check your blog pretty regularly. Gracie is so beautiful! I love how her hair is growing in so dark. What a gorgeous little angel you have.
Love,
Taunya Brown Boes
What a beautiful painting, Lisa! Of course I will continue to pray for Gracie to be in less pain. What a brave, strong, amazing little girl you guys have! It is difficult to image that her pain will become worse over the next few days. Do the doctors expect it to improve after day 7?
ReplyDeleteLisa-that painting is beautiful!
ReplyDeleteWow, the painting is absolutely lovely. I'll continue praying for Gracie!
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