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January 13, 2020

Internet isn’t working at CHOP, so small update from my phone. Julia is having an OK day. Vitals are all pretty decent. Heart rate 140s/150s, ET 30s/40s. The normal BP cuff is having a hard time reading, I guess with the fluid shifting around, so they have a separate machine in here. 110s/60s last I saw. They’re still getting about 100ml of fluid every time they open her abdominal drain. Her belly is looking so much better. And she’s making a satisfactory amount of urine. So it looks like her kidneys recovered at least some functionality with the pressure relief. I think she feels a little warm, but so far no fever. She’s had her eye open quite a bit today. She seems to go in and out of focus, but she’s moving the pupil all around again, which is good to see. She definitely can focus on people and her iPad, but then it looks like she gets tired and zones out. I have a video, but it’s taken slightly after her oral pain meds so she’s a bit loopy. We’ve not had any physical movement out of her limbs in quite sometime, but today she’s moved her head a bit. ... mostly to look toward the couch, I assume to find Reed. ~~~~ I have been slowly getting through all the messages of Julia stories and these awesome around-the-world pictures. I have SO MANY messages to go through, and I haven't been archiving (I just leave them), so if I respond to a message, it brings me all the way back to the top of my inbox. Then I have to scroll for 10 minutes to find my place again. I just say that because I've received so many AMAZING stories and pictures, some are super touching and so personal, and all I'm doing right now is an emoji in response. Which does not feel right, but... I'm spending more time scrolling than actually reading things. And the further down Facebook comments I get, the slooooower it gets. To the point that even doing an emoji response takes like 60 seconds for the pop-up (and if I click too early and open up someones profile, I have to find my spot all over again!). So I just wanted to let everyone know that I’m starting to get caught up, I just can’t respond all the time because it’s really slow. ~~~~ Picture of a beautiful poem and artwork by two different Julia friends <3 <3 I do have a video tonight, but I'm not sure how long it will take to upload.


(Website: Video on my Faebook, I'll update here whenever I can get it on YouTube. Internet is super slow. https://www.facebook.com/amy.largent.50 ) . . .

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

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund


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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What a beautiful, from-the-heart poem from Julia's friend! Amazing!


So happy that CHOP keeps finding the right things to do for this blessed baby! They are sterling people, to keep the fight going, and to be so thoughtful in their protocols. Everything that improves is another in a long line of victories for this warrior princess!


Amy, you and her DaDa are both amazing fighters, yourselves! You advocate so strongly for your child, which she richly merits. As the line from the poem says, "We prayed, shouted, begged and cried" - indeed we have and continue to do so. I hope, Amy and husband, that you have been on your knees the past year and these days as well, thankin…


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