June 9, 2019
I want to start with a reminder that I will never ask you guys for money (especially all shady-like in a private message). After my post last night, another few people let me know that an account with my or Julia's name is trying to get money, I assume via PayPal. It's not me. But please, get a screenshot and send it over - Facebook takes fraud like this very seriously, and I certainly don't want any of Julia's followers to get scammed. You're never bothering me by letting me know, and anything legit (GoFundMe, fundraisers, websites) is linked at the bottom of all my posts <3
Day 5 of 5 done! She's very tired. Heart rate has been in the 160s-180s most of the day - it's a known side effect of this chemo, and it's happened every round, but they're watching it. They also noticed her blood pressure is starting to get lower. Nothing serious yet, but they upped her blood pressure checks to every hour or so, rather than every four. This also happened the last two rounds of chemo, and they found that many boluses of fluids brought it back up (that's just a bunch of water through an IV). So... keeping an eye on both and they're ready to act if needed. Hopefully with the chemo over, she'll start to settle out.
She's only doing one HME breathing sprint a day right now, and it's only for two hours. She's just too exhausted from chemo and was struggling to breathe completely on her own (this is why she still has the trach - she still needs vent support). Again, not unexpected. Hopefully she'll recover some strength in the next few days and go back up to 2x a day. The point of the sprints, of course, is to strengthen all her breathing muscles so she can eventually be vent/trach free =) But the process isn't linear, especially while on chemo.
But in general, Julia had a pretty OK day! Still fighting nausea, so they're messing with meds. She kept Reed up most of the night so they took a long nap together in bed. Happy baby. Oh, she started grabbing gauze if it's within reach, and shoving it up under her chin <3 <3 We put gauze there all the time to help save her trach ties from when she drools or barfs... so now she's started helping by putting it there herself! Smart baby!
And it's VERY IMPORTANT for Julia that she notifies everyone in the room when a new cartoon comes on. She doesn't make many sounds, but she'll wave her arm frantically in Reed's direction until he notices from behind his computer screen, and then she'll excitedly point at the TV and smile. Usually several times as the theme song plays. Every new cartoon is the highlight of her day. And when some car (monster truck?) one came on, she picked up Tiger and started vrooming him around in front of her. So sweet <3
I'm trying to convince Reed to come home regularly for a night or two a week. He had such a good time with Gabriel (and of course I wouldn't mind the extra help planning/prepping the house), but several people have commented on how well Julia does when he's not there. She sleeps soooo much better. Probably because she's not distracted by her all-consuming love for her daddy <3 And she needs good solid sleep right now. So maybe a night every 3rd night or so where she can just focus on snoozin'. We'll see. Convincing him to leave is no easy task.
Video in comments is of Julia being the BIGGEST HELPER EVER and suctioning all her animal's noses <3 ... and then she needed a wipe herself and became a fuss fuss. I love seeing her play.
. ******** ~~ Julia Adams ~~ ******** *********** Official Links ********** (These are here because of scammers) *********************************
Julia's *only* pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's *only* fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S 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. You can find them all on my Facebook page or Julia's website <3