July 1, 2019
Little Ms. No Nap. She did at least try to nap today, but there were so many interruptions - change in Dr, new nurse, oncology team checking on lines, IV team checking on port... just really bad timing. And last night Reed fell asleep around 2am but the nurse said Julia was up until shift change (7am) happy as can be - smiling, playing, watching cartoons... They keep attempting to get her on a real sleep schedule, but every chemo round knocks that out of whack. So she spent much of the day in a little daze.
OT came in for an hour and had a really productive session. They brought in one of those games with the little round fish that 'float' around in a circle, and you use a fishing rod to try to catch them by the mouth. The fishing rod was a bit above her ability level, but she really enjoyed grabbing for them by hand =) So OT was focused on her coordination - trying to grab / place something that's moving. She was super into it and was wide awake for fishies! She even managed to get one of the round fishes to balance upright on her head for about a minute (probably stuck to her sweat) but she thought that was fantastic.
While seated upright, she was definitely using her ab muscles to pull herself forward to reach for a fish that was further away. So this is several days in a row we can see her very obviously trying to use her core. And while laying on her back, she's starting to arch her back a lot and squirm around. We keep checking to make sure she's not uncomfortable (laying on lines, bunched up PJs or bedding, not itchy, etc.) but there doesn't appear to be anything wrong. She's just arching and squirming. So maybe this is her trying to move. It looks weird, but it coincides with her starting to bend forward with her ab muscles, so this might just be her trying to get out of this hospital bed! Her face doesn't look uncomfortable - no tears or scrunching or anything - so we're trying to not discourage her.
We're back as far as Tuesday night for address submissions (for Julia's fancy business cards). So we still have the first 24 hours of requests to get to - if you sent it then, you should be hearing from one of us soon. The response has been really great! Several people have chipped in to cover the cost of printing and supplies (thank you! it has been 100% covered), and one of Julia's new Facebook Friends even stopped by the office today and dropped off several hundred dollars in postage <3 <3 So now it's really just costing my time (and the time of friends and family I've recruited... but they're happy to give it, for Julia). So thanks guys! I'm excited to get these cards in everyone's hands =)
Video tonight is of the most tired baby ever right after her bath and string change, being held by Reed while her bedding gets changed. About 3 seconds after he put her down she FINALLY fell asleep. So now she's passed out in bed, hopefully for the whole night.
. ******** ~~ 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