Tessa's counts hit .2 today, a day ahead of the optimistic guess! She's is my little warrior princess. The docs said that she is doing great, but that we should expect her counts to go up and down. Hopefully we'll start to see some real movement in the next few days. So exciting!
Tessa had both of her grandmothers doting on her today. Seriously, this kid has been through hell but she's pretty stinkin' lucky to have so many people who love her. They played, read and hung out together. Look at all of these princesses!
Here is Tessa and Noni watching Peter Pan (again!), thank you Uncle Eric and Uncle Jack!!! Can you see how engrossed they are? It's a trip to watch some of these old movies again. Remember how the Lost Boys go out hunting "Indians"? Plus there's a whole song about how the "red man" got to be red. Crazy. You can see the bath time princesses that she's holding sent to her by George, Amy and Chloe in addition to a Sophia the First book that we love! She was even more thrilled that Cinderella made an appearance in the story! Thanks you guys!
Later Dee Dee came by with dinner and her magic bag of books. Here Tessa is showing her the skin rash that she has all over.
Tessa's mouth and general condition are improving, but she had a rough day regardless. She has this rash over quite a bit of her body that has progressed over the last couple of days. The itching drives her nuts, and we're running pretty low on options for anti-itch meds. She was also so exhausted today that her threshold for just about everything was pretty low. We love the family visits, but mama's going to have to become a little bit of a nap nazi in the future. She just can't handle skipping naps right now, and if she goes down past 1:30 she doesn't get up until 5, which means we're up until 10:30. And mama just can't handle that. Going to have to have earlier visits that end by around 12:30, 1 at the latest. My pre-emptive apologies! Until Tessa is feeling better and has more energy she's just going to have to get a siesta in.
This is how Tessa and I sleep, smooshed together in our twin bed, snuggled close. I kinda love it despite the low comfort level. I can hear her rumbly breathing even through my earplugs (ok, it's more of snoring since we've checked in to the Hotel Stanford), and it soothes me. As she's falling asleep she has taken to mumbling a list of pains (my toes, my fingers, my arms, my wrists, my tummy, my head, I'm itchy) over and over until she passes out. At the beginning of this phase I would try to comfort her until I got that she was comforting herself. So now I lay beside her and listen until she drifts off. "My toes, my arms, my wrists, my tummy, zzzzzzzz....."
She is my little angel. She brings me joy. Every moment spent with her is worth the worry and fear that has come to us. i would choose this path again just to be with her.
Good night sweet angel.
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