Ups and downs today. Vitals are stable, with recent BP 106/60 (which is perfect). She had a slight fever last night of 100.4 (38). They generally start to get interested at 38.5. But nothing today. The new thing is the red circle around her belly button is changing. Again. This whole unknown-rash thing started as a pink circle around her belly button almost two months ago (no temp or texture, blanchable), then it quickly spread outward to cover almost her whole belly. Then the last few days it's really faded off the rest of her belly, and is kind of back to circling her belly button. Today the rest of rash is even more faded, but now the belly button circle is a brighter red and has bumps. Reed described them as looking a bit like poison ivy bumps. So... that's new. Or at least different. It's still blanchable, but now it's textured. Infectious disease is looking at it again and will decide what the next steps are. But she had much more mouth movement today. We still can't say it's anything super purposeful, but definitely moving it a lot. She's grimacing and making angry/sad faces at the nurses again (which is really great since she's kind of just laid there completely motionless for more than a month). She's had lots of alert time, and 'seemingly' watching cartoons. Today it was a Bubble Guppies marathon, just in case she's grown to hate Peppa and can't tell us. Giving her a break now and then =) And Reed said she very clearly pulled her head away from him, just a smidge, when he was harassing her with kisses (he does that). AND he said she 'very clearly' attempted to grab his hand. He said it was a small movement, but it was all fingers at once. So far we're all just kind of noting that these are new (again) things she's doing. It's just far too early to say if they are signs the cancer is shrinking, or if it's one of the many other changes happening that might be giving her a tiny bit of movement back. Because again, this chemo is NOT expected to work. She would need to have (another) miraculous response. ~~~~ I had a Gabriel day today <3 So many cuddles. He asked to call daddy, wanted lots of hugs, and used me as a ladder and slide for like, 2 hours. Then we ate dinner and he sneakily dropped his broccoli on the floor. And he wrestled his 9 year old cousin for a Nutella sandwich (and won)... that video is included tonight. And then I convinced Charlene to go to the gym at 9:00 at night and we met a Julia follower (hi <3) Oh, so pretty much right before Julia came back to the PICU, we received these most amazing hand-made wonder woman outfits!! They are AWESOME! I had them in the PCU with plans to do some dress-up with Julia, and then everything went crazy, we packed up the room, moved back into the PICU, things were super stressful, and I completely forget about these. I just saw them again the other day while cleaning her room, and they were just as amazing the second time! It's been so long since they were sent, I have no idea who made them. But I LOVE THEM, and I can't wait for Julia to get better and dress up as a super hero <3 <3 (Every nurse who has walked in has gushed about them <3 <3 )
YouTube: https://youtu.be/DS5fjFC1ung . . .
*********** ~~ 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): 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