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November 18, 2019

Today has been... something. I finally had time last night (around 2am) to go through all this mail that has been piling up on my counter. I thought I was going to watch some TV and get all Julia's insurance notices filed... but instead I opened a "Final notice before arrest" and a notification that my license was suspended last week. So that was super fun. In September I was pulled over for having an expired registration. My fault, but honestly it never even crossed my mind with everything going on. I corrected it immediately, but then promptly put the citation somewhere out of sight and never even thought about it again. So I didn't send in my response. Apparently they've sent several letters... all of which got opened last night. Weeks too late. So I spent the day on the phone with the police, the court, and PennDot. Everyone has been understanding of the situation, but unfortunately I missed the deadline so my license was already suspended. There are steps that need to be taken to get it reinstated and that can take several days. It's in progress, but nothing could be done immediately. . So that's all very frustrating. It's my fault, so I can't even be mad at anyone. Which makes being frustrated worse. I should have it back by Friday, so I'm going to try to work out some hospital trips this week. I hate to inconvenience people. Reed should be able to at least do it once a day. Tomorrow is his birthday (not like he cares), but if I can at least get to the hospital, maybe I can convince him to get some dinner when he brings me home. He eats the same exact thing every day at the hospital, I'm sure he'd enjoy something different. ~~~~ Julia has had another pretty OK day. Vitals have all been fine. She slept well last night and took another long nap this morning. She's nice and opinionated, which is way better than bring lethargic. She's still tolerating her chemo just fine - no nausea. I believe Mebendazole starts tonight - they were just working out some final details with how they'd like to handle dosing. She's been staying on her vent more, rather than the HME, just because she's been a bit weaker. She's much more comfortable with the extra breathing assistance. Her right eye (the closed one) has been a bit puffy today, and there might be a little gunk in it. The theory is that she's just been laying on that side more often since it's easier to control the iPad, and because the eye hasn't been moving, it's just been accumulating some fluid. So I guess they're trying to keep her on her left side more and using a warm compress. Last January when her right eye stopped working, the lid always looked swollen as well, so I'm not super concerned. She did PT today, and participated. She was clearly more tired than usual, but she cooperated =) She refused to do anything if the therapist was helping. Julia can do it herself, thank you! She also asked to color again, but Reed couldn't find any markers. I will bring some new ones down tomorrow - they probably got lost in the move from the PCU. Speaking of which, they are seeing what they can do to shuffle everyone around and get her back in isolation over there. Work in progress. But she's given Reed several excited O faces when she found a cartoon she liked, AND he got the smallest smile and hand-over-mouth giggle when he tickled her feet. That's the first time we've gotten a laugh in over a week! So that made me super happy to hear <3 ~~~~

Pic: She fell asleep holding her most precious possession ever <3

Video: Reed got a clip from PT today. You can see she's weaker than she was a month ago, and she definitely does not like the therapist 'helping', but she did a great job. I wish all her video updates were just positive progress... but maybe in a month we'll get to compare to where she's at and see an improvement. Also added another clip from 1 year old Julia. I had music on all the time to clean and stuff, and I always found Julia just bobbin' away in some random part of the house =)

********** ~~ 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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