August 5, 2019
Mostly happy baby today. She only slept from 4am-9am, and hasn't napped, so she's been pretty tired. A few times she started to doze off and Reed tried to help by turning off the TV. Nope; woke her right back up with the 'no-finger'. She was still watching that, thank you.
Everyone is very happy with her blood pressure. It's been solid these last several days without any of her BP meds. Her climbing blood pressure was one of the first signs that something was really wrong, and that the tumor was out of control. The pressure on her brain stem was so great, the highest doses of two BP meds had absolutely no effect. In January, we watched it sit at like, 190/130. It could spike to well over 200. We really held our breath with every BP reading, hoping to see something under 180. So now, with all her progress, they finally stopped her last BP medicine and her body has been regulating perfectly <3
She had a routine x-ray done last night to check the status of all her feeding tubes. Everything looked good, but they noticed she was a bit backed up. So they gave her some stuff, and boy... did it work. Like 5 times. Between that and a few massive snot-barfs, she's in the process of getting more fluids again. Her heart rate is sitting a bit high, and that's been a sign of dehydration in the past. And her secretions are thicker today, likely due to the medication change, and they've led to some impressive sneezes. See exhibit A
But she played with her grocery basket most of the day, with a few breaks for her finger puppets (Peppa and Paw Patrol). She figured out she can put the puppets on someone else's finger, and (somehow) that was a solid hour of entertainment. And she wants them facing her, so she'll twist them until they're perfect. Great fine motor control with her right hand! Oh, and she turned down a pretty pink manicure today (see exhibit B). She was getting a bit aggressive with the scratches, so it was time for a trim. They figured they'd do her nails while they were at it. Reed sent me a pic of her turning away from the nail polish, and I happened to notice she had naked nails once I finally got down here. So... that was unsuccessful =)
Gabriel is doing great =) Recovering as expected from his cold. We'll scoop him back up on Friday. Video in comments of happy Julia <3
YouTube: https://youtu.be/gbHCKXXZKKI
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. ********** ~~ 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
