April 29, 2019
Tired and grumpy. So, not much changed since yesterday. Her heart rate was staying pretty high, and they determined one of her blood counts was getting low, so she got a transfusion. It's in the 140s now, and they are happy with 120s for her. So, getting better. Other vitals are fine. Some mucus gags today as well... but so far we've not found a great way to prevent those.
Child Life stopped by to drop off fat markers and some coloring paper, but she's been too tired (and cranky!) to even try it. They had tried crayons a week ago, but they take too much pressure to color and Julia isn't quite there yet. I think markers will be a hit if they can get her in a good position. They're thinking of just sitting her up as much as possible and putting the typical rolling hospital table over the bed, but we've yet to determine how far she can tilt her head down (due to spine fusion), if at all. So far she's really just looking down with her eyes. So a low table like that might be kind of obnoxious. If it doesn't work, they'll look into an easel. But if they CAN convince her to look down, assuming her hardware allows, it would be GREAT to get her working on strengthening that direction! She's had better-than-expected range left and right, but minimal up and down. (For new followers: her spine is fused from C4 up to her skull, due to having to remove so much bone to get the initial tumor out in November. Her health went downhill fast after that, and she never got to do rehabilitation... so, that's in the mix still with everything else.)
So she was SUPER grumpy today, but she did manage a few giggles when Reed would put Tiger on his head. She seems to get really tickled when daddy is confused. Where's Tiger!? She likes Tiger on daddy's head, mommy's head, Gabriel's head, Peppa's head... and thought it was particularly funny when Tiger went on top of the phone during FaceTime. I put together an adorable compilation of Tiger-On-Face pictures - this is how she naps now. She has the same red bib on in a lot of them, but these are all different days over the past ~2 weeks. This is how you know she's really sleeping (and not fake-sleeping for the nurses) =)
This morning the plan was to get Julia out of bed, into her stroller, and into the hallway for a walk! But Julia has been soooo tired, it just didn't happen. They couldn't keep her awake! But these nurses are determined to see her out of this room. MAYBE in the next day or two I'll have something like that to share <3
Our oncologist stopped by today. No news, but just to check on Julia. She said she looks great, (especially considering the rough chemo), and she said everyone is genuinely super happy with her progress! (And to answer some random comments - apparently yes, "asshole doctor" has stopped by to see Julia since we've been in the PCU. Reed says he was interacting with her and was also genuinely happy at her progress. So... who knows. He's the one who had no interest in doing another MRI, or attempting chemo, because she had no chance.)
Anyway! I'm not down there today. I just asked Reed if he happened to get a cute video for the update tonight, and he laughed and said, "Oh, there's definitely no smiles going on". So... grouch baby. I'll use this opportunity to share another video from October - the month we took her to the ER. You can see trusty tiger was with her as always; Gabriel hadn't learned to walk yet; and no matter how much of a hurry she was in, she never got off her donkey! She bounced on this silly thing EVERYWHERE. And once Gabriel learned to crawl, he kept blocking her path and she'd get annoyed <3 So this was about 2 weeks before we brought her in.
Oh - and I think I've mentioned it several times, but Gabriel has been living with Aunt Charlene and family since Julia went to the hospital. Last night I had him sleep at my house for the first time in 6 months! It was wonderful... but first thing in the morning he literally called the cops to our house. So there's that. Mom of the year. (Don't worry - he hammed it up and they didn't take him to jail.)
. . . ********************************* ********** Official Links *********** (These are here because of scammers) *********************************
Julia's *only* pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's *only* fundraisers: T-shirts: https://bit.ly/2MQc0lF Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3