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October 22, 2019

Early update, just because I'm going to the hospital at a weird time ("everything is fine"). And longer update, lots to mention, but all kind of time sensitive. If you skip the update, the PT video is definitely worth a watch though =) . What a mixed day today. Julia has had literally her best day since her surgery on November 15th. Today was GREAT! She had all three therapies and was a ROCKSTAR at PT! I have videos. And after calling Reed and telling him how amazing all the PT videos are, and how I clapped and cheered at my computer screen, he said, "I don't know if they're going to mention it to you, but..." Ugh. The anxiety and paranoia is real. It's clear I'm still just waiting for the bad news, and I'm ready for it at any minute. He has stressed that "no one is concerned". but apparently last night after she dozed off again, she woke up around midnight and her right eye was weird. Reed just noticed it was off. It seemed lazy and sluggish. He said it was semi cross-eyed while looking at things, but then would like, "snap" to attention and work correctly. Her eye was very weird when things were bad. At her worse, neither eye did anything. As she got better, the left eye functioned correctly well before the right. But for many months both eyes have been great (though the pupil of the right eye still doesn't respond). Whether accurate or not, I have directly correlated 'eye weirdness' with tumor growth / shrinkage. So he called in the nurse, and I guess the nurse practitioner stayed in the room for like 45 minutes just observing her. The concern of course is pressure in her brain, either due to an infection like she had before (that caused her stroke), or much worse, the tumor growing and pinching something. So Julia almost went for a ride down to an emergency CT scan. But pressure in your brain comes with other neurological symptoms, and she just didn't have any. She was acting like Julia, responding like Julia, pointing at Peppa and making silly faces like Julia. Her eye was just .... weird. He said that over the next hour or so, she seemed to just kind of come out of it. But I guess then she slept again all night (surprising considering her excessive sleeping the previous 24 hours), and today she has been fantastic. She is laughing and hugging and clapping, and just wait until you see her PT video. So "no one is concerned". Obviously if anything got worse, they would have taken her right down. But I guess the plan was to just observe her today and make a call, but she's had her best day in a long time. I guess I'm hoping whatever made her so tired yesterday just exaggerated a lazy eye that has always been there, and it's not actually something new. . I spoke with the continuity nurse today about everything going on (or not going on) to get her to rehab. Everything sounded good, for what that's worth. The Ativan + Benadryl combo has been stopped. They are just going to watch her vomiting for a bit, rather than immediately try to treat. Melatonin was stopped a few days ago. She is going to talk to PT/OT/speech to see what can be done with an actual schedule. She agrees it's time for some tough love to get her through her therapy, which means waking her up on a schedule and dealing with some grumpy days to get to where we need to be. She also mentioned that Julia needs to experience a 2-week period of stability before a transfer will happen, and she's not there yet (this is good news to me - I'm perfectly content with her at CHOP). For her to be considered stable, they'd like to see her vomiting under control - speaking of which, no barfing in almost 2 days!. And they want to see consistency on her vent rate. They've had to adjust it a few times these past couple days, so that is not considered stable. Though there is a possibility the med combo just made her really tired and kind of skewed the data. Either way, 2 weeks of stability has NOT started yet, so we're possibly looking more like mid-November for discharge. No additional notes have been sent to DuPont yet for evaluation, and she did confirm "DuPont" is goal, not "rehab" in general, which I appreciated. She said we're all on the same page as far as destination. . They also trialed her with her trach cuff down today and she did GREAT! I included a diagram of the cuff. So this balloon is inflated to keep air from exiting through the upper airway (mouth/nose), it also helps prevent aspiration (stuff getting down into the lungs). Being able to tolerate having the cuff down/deflated is a critical step to eventually removing the trach. The major concern for Julia with the cuff down is aspirating. They wanted her to be vomit-free before they tried, but her excessive mucus is also a concern. They don't want it just kind of sliding down the back of her throat and into her lungs. You and I generally just swallow our mucus. But Julia has had a swallowing problem since around January (that's why she spits so much), so they need to be extra careful that mucus is still getting where it needs to... as in... anywhere but her lungs. But she had the cuff down for 1 hour 15 minutes today and did GREAT! It was down during her PT session. Reed commented that to his untrained eye, she actually appeared to do much better with the cuff down. There was no coughing or gagging, and no excess mucus coming out of her nose or mouth. As soon as the cuff went back up, the gagging and snot started again. My immediate question was, well did it all slide down into her lungs then? And he said she would be coughing it up, or her vitals would start to decline. So... too early to make assumptions, but the first trial of no-cuff seems to be a great success =) . But her big day was with her therapies! Reed was in the shower during OT, so he doesn't know how that went, other than he heard them talking and playing with her. Speech immediately followed and she was in her fancy chair for that. Apparently she was more grumpy by this time and only wanted to color. So I guess they colored. Then she took a nap, then she had THE BEST PT SESSION EVER!! She sat up so well all on her own! She is noticeably less wobbly than she was just two weeks ago when I posted a disclaimer with her PT video. She leans forward. She pushes herself up. She throws toys into a bucket like a champ. She has laughs and smile and claps while seated. At one point she even lunges for a toy because "she can get it herself thank you"... she falls on her face and cries but STILL. This girl is READY TO GO. It was just such a great session. Everyone is super happy. I'm going to put together the happy Julia, the sad Julia, and the determined Julia in the video. It's not all unicorns and rainbows, but she worked so hard and did such a good job =) . I'm headed to the hospital late tonight, so I want to get this up early just so I'm not dealing with a longer video and hospital internet. Video in comments <3 <3


YouTube: https://youtu.be/cPkkfHIwcL0 . . .

********** ~~ 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://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph 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. You can find them all on my Facebook page or Julia's website <3




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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!