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January 28, 2020

An OK day. Vitals are all decent, but a little up and down. BP was looking really great at 100s/60s most of the day, but now it's back down to 70s/40s. Not horribly low, but not consistent. Heart rate has been a bit higher than normal in the 150s. They also found a fever of 102.3 in the afternoon. She gets started on several antibiotics immediately, which happened, and got all the blood work and stuff drawn to find out if she's fighting something again. Stomach looks about the same as far as size and redness. They did an ultrasound of her left arm to check the status of the clot (that formed around the central line they put in / took out a week or so ago); still waiting on results there. Besides the fever, the only 'new' thing today is she made an angry face when they tried to brush her teeth. Julia is an expert at the angry face - it used to happen right along side her no-finger. But seeing her make the face today made us realize we haven't seen it in a while. She's been pretty expressionless for several weeks. So the last few days it's been big yawns and now a go-away expression. I'm not even going to put any brain power into hoping these are good signs, I'm just acknowledging they are slight changes to her recent norm. ~~~~ Picture tonight is of one of Julia's super-sweet handmade Peppa hats! It looks like it fits her perfectly, her head just looked so comfy in the z-flow pillow and I didn't want to bother it with her shunt and bedsore. But she definitely gave me the Julia-glare when I fiddled with her to get it on <3 (But then looked super adorable) Video with Peppa hat in comments. Also, posting the video of Gabriel running up to see me yesterday made me realize I never posted pictures or videos of our deck. Back in June, discussion started about her coming home. She was stable (improving) and her care did not require a hospital. So the quest for home nursing began, and we had to start getting our home ready. I posted about it a bit, and our biggest problem was getting a wheelchair-bound Julia up from our driveway, as all entrances to our home are a story up. I met with many contractors and the prices were... pretty steep. And for not a whole lot other than a walkway or ramp system. We even looked into an elevator. A Julia friend suggested I talk to her fiance who is a local contractor, and it was immediately a good fit. His crew was filled with paramedics and ER nurses, who did a really fantastic job (they even gave me pep talks when I left in the mornings while I was struggling with her trach changes!) Instead of just a walkway up the back yard, they wanted to redo the entire deck. Our deck was in BAD shape. It had rotting boards, the stairs were unusable, the railings were all loose, and the contractors who quoted prices had no idea how the supports over the driveway passed inspection. So this company completely redid the deck out of composite, with new supports, and we changed the color scheme from browns to greys/backs, to match the more modern fixtures we have inside the cabin (despite what our home suggests, we aren't super rustic). Anyway, the deck is BEAUTIFUL. It is sturdy and safe. I don't get splinters when I walk on it. Delivery people aren't going to fall through it and sue me. And they added a wheelchair friendly walkway down to the driveway, with a ramp section that is built and ready to attach over the stairs when needed. The far end of the deck isn't finished, as that will be wrapped around the house (which is a bonus, because it didn't used to wrap around the house on three sides). The project is a bit slow going with permit issues, weather, and holidays. But, it's so above and beyond what we needed to get Julia in the house, and I so appreciate all the work they've done =) I planned on decorating it and taking nice pictures in the fall (my favorite season). Julia was doing really great and getting ready to go to rehab. But then, right before Halloween, her cancer returned and life turned upside down again. So I completely forgot all about doing deck pictures for everyone. Until the video yesterday. I had also thought ahead and snapped screenshots on my security camera every hour or so, thinking someday I might do a time-lapse. So I put that together tonight and added it to the video, along with the best 'after' shots I happened to have. The underside isn't done, and the house is half-sanded, so it's still a work in progress in these pix, but they are enough to show how nice it is =) Bonus clip of happy Julia over the summer at the end <3


YouTube: https://youtu.be/_ySY4vRmuMY . . .

*********** ~~ 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://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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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

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!