Elle has her first counts in. She has a white blood cell count is 0.1! This is nothing but it is a beginning! This may mean her new donor cells are starting to engraft and it usually goes very slowly. Her liver and kidneys still not great, but not unexpected at this stage of transplant. She has a lot of thick, thick secretions in her mouth and airway and is requiring very frequent suctioning through the ventilator (doesn't touch tissue). She is still swollen; I am jokingly calling her "Puff Baby". Just more of the same except she is leaking orange tears occasionally (because of her high billirubin). Others say their kids did this at one point during this stage so I am trying to be patient. Her dad gave her a beautiful card with an Emily Dickinson quote, "Not knowing when the dawn will come, I open every door".
Stefan relieved me today and I went to the Minnesota Zoo this time with Timmy and Chloe. It was a sunny, perfect, beautiful day in the 70's. (We heard about the California heat wave-Sacramento 103 today, yes?) Chloe kept saying that the trees were purple or red and so pretty and I agreed. We had fun but walked and walked and we wore ourselves out.
RMH (Ronald McDonald House) had a very special dinner tonight from Cooks for Kids. It was a very nice spread with ribs, roasted chicken, prime rib, slider cheeseburgers, and lots of yummy sides and decadent desserts. They spoil us sometimes.
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| Photo from maybe May? |
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| This used to be her constant position before she started aspirating |
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| Chloe pushing Daddy around on a little wheeled toy at RMH |
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| Craft time sitting next to her favorite volunteer |
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| Making what turned out to be a gorgeous mask |
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| Timmy wanted to photograph me after an all-nighter with the baby |
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| Little bear Chloe's cousin Maggie sent in the mail |
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| Look at the size of this shark at the Minnesota Zoo |
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| A Leafy Sea Dragon is related to a Sea Horse |
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| Bactrian camels as seen from the Monorail -one is taking a bath in solitude |
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| Big cats and little cats act just alike - this could be my Phoebe |
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| The blank look amused Timmy and me |
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| Lady Moose |
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| The Family Farm, a display of common products produced from Midwest crops |
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| A collection of odd, zoo animal scarecrows |
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| Looks like he's wearing an Eastern European Hat |
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| Looking at fish from an unusual vantage point |
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| Tropics portion of the zoo |
Hi Becky: Just checking in to see how your precious little Elle has been doing. Praying that all goes well.
ReplyDeleteLove the pictures. Hope you enjoy the fall temperatures and colors. I forgot, you guys don't have a fall in California, do you? You will love the fall and winter too.
Keep the Faith and remember the EB prayer warriors are out here praying for all the EB kids. I am a little partial to beautiful little girls, especially with JEB. Love and Peace. Leah's Nana
Glad you are seeing parts of MN. I have been here all my life and forget what we have to see. Praying for your sweet little Elle. Brenda MN
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