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October 28, 2019

No results and no news, but today sucked. For me. Julia's been fine. But my anxiety is the worst it's ever been. Back when all of this started, I was in shock at the diagnosis, and grieving for my dad... it just seemed like the twilight zone. It's been a year of this and I'm no longer in that weird funk, so my anxiety is full blast. Her progress has been so solid and encouraging recently that I actually started to believe she might be a miraculous survivor case. So the unknown today has been very difficult. I don't know how to "not worry". We have a team meeting already schedule for tomorrow - it was scheduled before the eye thing started. I told Reed I don't want to get blindsided by news while in the meeting with 15 other people. So I hope I find out before-hand what's going on. She just got back from her MRI - it was a longer scan than usual. She was last on the schedule, and since she was done so late, only the overnight person is available to read her images, but they are usually busy with emergencies (make sense). This isn't an emergency so we likely won't get any information until tomorrow. . Other than her eye still being weird, she's been in good spirits today despite awful sleep last night. She protested sleep until 3am, then finally got bored enough to sleep until 6am. Then she was awake and insistent that she get her iPad, so she got her iPad (which is fine... she'd only been asking for it since midnight!). But since awake, lots of smiles and hugs. They kept her hooked up to her vent in case an earlier MRI slot opened up, so no cuff-down trials today. OT worked with her for her morning session. She was seated upright unsupported in bed playing with an inflated ball <3 She wore out quickly and got fussy - maybe 20 minutes - but I don't think anyone blames her! That's hard work using those muscles again. PT came by, but she was busy fighting off three adults trying to stick her with an IV so she missed that session. Ophthalmology expected to see her after her MRI today, but because it was pushed back so late, they didn't get a chance. They believe their next opening is Wednesday. Depending on what this MRI shows, they may do a seizure study. At this point, we will take anything at all that isn't "tumor growth". Many people suggested she might be having seizures. Some suggested a simple lazy eye. Some suggested she might be going blind in her right eye due to prolonged stress and being untreated. All of those suck, but whatever. . And our un-sedatable Julia struck again while getting prepped for her MRI =) They got her all doped up with meds, did he MRI-friendly trach change, and wheeled her down to the MRI room. By now she should have been OUT! But when Reed leaned in to kiss her, her eyes shot open, hand reached out and grabbed him, pulling him in, 'dadada', giggle giggle giggle, kiss kiss kiss. The nurses were shocked! So she got wheeled into the MRI room pointing over her shoulder mouthing 'dadadada', and then had to get hit again with another dose of 'go to sleep'. She woke up about one minute after the procedure was done, and got wheeled back into her room wide awake and swinging. She is OVER this sedation nonsense. ~~~~ Video in comments: I put together a few clips: 1. Showing her strange zombie stare when I first arrived yesterday; you can hear my concern when I call her name and snap my fingers. Not the response I was expecting. Then 2. A video Reed sent later last night showing her eyes responding mostly as-expected while watching her iPad. Then 3. Julia being HAPPY playful Julia <3 <3 To me it appears her right eye is not looking down when it should. You can't see the left eye, but I ASSUME she's looking down at Peppa... just her right eye only looks straight (but perhaps she's intentionally looking straight?) and 4. Late night clip of Gabriel and mommy <3

********** ~~ 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. You can find them all on my Facebook page or Julia's website <3

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