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April 14, 2019

(She's fine - I'll start with that!) Last night while Charlene and I were visiting, Julia just didn't look herself. She seemed lethargic, and extra grumpy, and her color wasn't great. We kept commenting on it, but everyone figured she was just very tired. Around 11:15 when we were getting ready to leave, they took her BP and it was low of her: 80/50. We hung around for 20 minutes while they looked at some things and took it again, and it was 70/40. ‍‍‍‍‍‍ ‍‍

So the same thing that happened a week and a half ago happened again - really lethargic, not protesting during diaper changes, and then they found her blood pressure was dropping. So they did all the things they do - ultrasounds, blood work, tests, etc. In the end, they gave her a few rounds of fluids and some steroids and she seemed to respond. ‍‍‍‍‍‍ ‍‍

I never like seeing 5 people in scrubs hovering around her bed. It was a tense few hours (for me, since I'm paranoid). We finally ended up leaving around 1:30. ‍‍‍‍‍‍ ‍‍

So just like last time, they're not sure why she's doing that. Save for a few longer tests, all labs are coming back fine. They're tapering off the BP medicine she's on, and the Ativan, and they're giving her some extra fluids today. (And update on her right eye since they checked it - it is still not responding to light, but we expected that. They'll check again in a few weeks [they don't check every day anymore because it was clearly causing her pain, and it doesn't really matter].) ‍‍‍‍‍‍ ‍‍

Anyway, she's been acting totally normal today. Vitals are solid: heart rate 120s, oxygen saturation high 90s/100 (was high 80s last night), ET mid 30s, BP 101/62. Her color is better, and she's interactive and alert. She really got into a "5 Little Monkeys" song earlier! She would pat her head when they fell off, and she'd kick her legs and really arch her body when they were jumping. She wants to jump with them so bad! And she'd wiggle her little finger all sassy-like for "no more monkeys..." So THAT is all very typical Julia <3 ‍‍‍‍‍‍ ‍‍

Her trach cuff has been deflated all day again today and she's doing fine. She's much more vocal when she's upset now, but so far no words. They said it can just take time for them to figure out how to talk around it, but the opportunity is there once she gets it! I'll also talk with speech therapy tomorrow about any plans to get her eating again - not so much for nutrition (I'm super happy with nutrition going through the tube), but maybe just so she can taste things again. She hasn't tasted anything besides her yucky medicine since NOVEMBER! I'm sure she'd love some mashed bananas. But I have no idea if that's in the cards or not. I'll find out. ‍‍‍‍‍‍ ‍‍

She just got her bath, and is wearing a beautiful new nightgown from one of her Facebook friends <3 (and is cuddling with a new blanket <3) She just had a 30 minute FaceTime sing-along with Aunt Charlene and cousins, and now she's out. ‍‍‍‍‍‍ ‍‍


. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************

Julia's *only* pages: Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers: T-shirts: Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || 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

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