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January 23, 2020

Another roller coaster of a day. She was doing pretty great until her blood pressure was checked and found to be 33/11. So that was fun. They checked it many times and even confirmed with a different machine. Then the doctor party filed into the room. Drawing/testing blood right at the bedside. Lots of conversation and suggestions. (I was just talking to her nurse and told him I'm updating about the blood pressure, and I didn't want to exaggerate how bad it was, and he said 'it was pretty bad, no risk of exaggeration'.) They gave her and Albumin treatment and extra fluid immediately, some calcium, as well as placed another IV for Epinephrine. She responded pretty quickly and her blood pressure (with the meds) has been more stable in the 80s/50s. So she is getting a steady low dose of Epinephrine. It is caustic to the veins, and she no longer has a central line, so they're being very careful with administration. This is a medication they would not want her on for an extended period of time, as it can have some severe side effects. So the hope is to stabilize her blood pressure with fluids, Albumin, and Epinephrine, and use this time to increase the drainage on her stomach. It's getting hard again, and affecting urine output. So they want to make some progress there, but it's a very challenging situation with the low BP. . But before the random emergency BP drop, Julia had a pretty alert day. Her eye was open for quite a while and very clearly finding people (and her iPad). It would kind of slide away to an unfocused state, and she could definitely zombie-stare it a bit, but there was no question she was finding us. She even clearly mouthed 'dadada' several times. And would preemptively pull her tongue in when Reed said he was going to poke it (so she heard, understood, and reacted). I've tried to get her to say dada, or anything, on command, but so far no luck. ~~~~

Bryan, with, turned Julia into the most beautiful Princess Warrior!! Check out his foundation's website and see the wonderful work he does for kids! I'll try to get a quick video uploaded <3 (Link will be when I get home for the website - My phone doesn't upload to YouTube like it does to Facebook) . . .

*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Julia's official fundraisers: T-shirts: | Jewelry: Car Magnet:

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

Chordoma Foundation:

If you're new and want to know what's going on, my first post about Julia was on October 31st 2018. You can find them all on my Facebook page or Julia's website <3

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