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February 4, 2020

No emergencies today. Vitals are all pretty good: heart rate 140s, BP 90s/50s, ET 40s. They continue to drain at the higher rate and so far have had no blood pressure drops. The dark redness on her stomach is also starting to fade. Now it's really obvious around her belly button (where it started) but it's starting to look better elsewhere. No idea if this is a good sign or doesn't really matter either way. The team doesn't know either. She has only peed 2ml all day, which is pretty much nothing (they want to see 12-15ml per hour for her size). No one is really sure why. It is known she has a kidney injury, possibly from a bunch of things / possibly only from pressure, but all tests continue to indicate she is not in renal failure. One theory is that her abdominal drain is kind of like a dialysis-lite. Two of the main functions of the kidneys are to manage fluid volume (the drain is doing that) and get rid of electrolytes (the drain is sort of doing that, possibly more-so because "her capillaries and vessels are so leaky" [I'm not actually sure how that whole process works, but the doctor mentioned that part so I figured I'd include it for the medical people who follow]). So it's possible that the drain is doing the work for her kidneys, so they're just being lazy. But they're not sure. The doctor said they could run more extensive tests daily to confirm this is acting like a dialysis, but everyone agrees there is no point. We wouldn't change anything, and we wouldn't start her on 'real' dialysis given her condition. The dark green discharge around her g-tube has slowed drastically, but she's also not getting regular feeds, so that is likely why. Also she has started getting pretty veiny in her torso, but the doctors say that's likely from the lacking nutrition (she's currently on IV nutrition only - this is adequate for quite some time, it's just not ideal). Her hands and arms are looking a LOT less swollen. It's the first time in a while her hands look like hands. And again, no idea at all if this is a good sign. It could be absolutely nothing and just a shift of fluid since she's being drained more aggressively. But it sure was nice holding a non-balloon Julia hand. And... not reading into it (I want to make it clear she doesn't look great in general, especially her zombie-stare), but Reed told me this morning he felt a finger twitch but couldn't see it with his own eyes. So I held her hand and videoed. I felt a few finger twitches, and I think I caught the smallest one on camera (it's hard to see on my phone). And in the interest of not getting excited, she did just have a serious reduction in arm/hand swelling, so that could be what's allowing her to move a fraction, rather than anything to do with the cancer. That video is in the comments.


YouTube: https://youtu.be/aiLYaovmd-Q . . .

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

Julia's official pages:

Website: juliaadamscancerfund.org

Facebook: Julia's Fight Against Rare Cancer - Fund

GoFundMe: gofundme.com/juliasfightagainstcancer


Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://bit.ly/35ppbSx Jewelry: https://etsy.me/2E1mR8i Car Magnet: https://tinyurl.com/y4nxr3lr


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


Chordoma Foundation: www.chordoma.org

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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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!