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December 29, 2019

Julia has slept the vast majority of the day. Well, I guess we're back to not actually being sure of what she's doing. Is this considered 'sleeping'? Is it more of being unconscious? I don't actually know where the line is drawn. It's not like she's so tired she needs to sleep, it's more like she's unable to stay awake. If you were to add up all her awake time, it might be under two minutes for an entire 24 hour period. While awake, for a few seconds, her eye does still find us and her iPad, but she falls back asleep immediately. Her mouth can still move a bit, but I haven't seen any purposeful mouthing of words in several days now. She can still move it when they try to get her with the mouth care swab though... that continues to be a big fat no from Julia. Her vitals are all pretty OK. Heart rate 120s/130s, respiratory rate mid 90s with 30% oxygen support. ET 40s/50s. BP 100/50s. Her vitals can still spike if she's definitely unhappy or uncomfortable, but they are all pretty solid throughout the day. They're starting up routine breathing treatments / chest PT again to help clear her secretions. For a while there she was able to handle everything on her own (with coughing), but not much anymore. She did pee twice on her own, just a little bit, once last night and once today. No one has commented on what that might mean, but it's the first time she's been able to go at all in... maybe two weeks or so. All these days are running together. They have also changed up some of the laxative meds to help get her cleared out, and will give those a day or two to work before moving on to something else. Her tummy swelling is not worse, but not noticeably better either. And with her limb swelling, especially in her arms, we've noticed indents from anything they've laid on. Like, her arm was just moved and there is a huge indent from a super small tube running from her trach. You'd lay your arm over this and not even know it was there (as she's done for the last year). It's just not something we're used to having to pay attention to, so now we're being super careful with where we rest her arms and hands, and we're using blankets and her stuffed animals for protection. But as far as Reed and I can tell, Julia is comfortable. Definitely not when she's being moved, but when she's just laying still with her Peppa on, she's as content as can be hoped for right now. This new chemo she's been on was expected to take 6-8 weeks to even START to see an effect, and in that time, she was expected to continue to decline. We are just now entering that 6-8 week period. So our hope is that she can stay comfortable while we see if her body will start responding to the treatment. No video tonight. . . .

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

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

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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