June 13, 2019
Just gone done bath and string changes. Even with an extra dose of Ativan it's so stressful (for me and Julia... Reed's fine). She just gets so worked up and it's hard to see her like that. I don't know if anything less than full sedation would take the edge off -_- Some nights she does pretty OK though - so it's hit or miss.
She had a pretty good day for her hemoglobin being so low (this would normally be the time she's super exhausted and miserable). But she's been giving out lots of waves and kisses. The nurse said she even waves at daddy in the middle of the night - he could be sound asleep and she's just energetically waving to him with no response. I say we should get her a bell. Reed still says no... she'd ring it literally all day long. And great news - no barfs at all today! Not even during her bath and strings, which is great =) Hopefully a few days barf-free so she can rest.
She did an AWESOME 4 hours on her HME sprint today! That's the longest stretch yet without the vent. She did so good at the 3 hour mark that they just let her keep going. She even took a nice long nap on it (she usually has her vent help during her naps because she gets so tired, so that's really great).
And we've started putting stuff that she wants into her left hand, hoping she will transfer it to her right - like one of her animals if she chucks them over to that side. So far she hasn't successfully brought her hands together, and generally, she just drops it immediately, and overall doesn't seem super-aware that she's holding onto something (for her new followers - we're still trying to recover from stroke damage on that side). But one time she held on enough, I think on accident, but I brought her hands together and she was able to grab it with her right hand and she was VERY proud of herself! So we're just going to keep making that a priority every day and hopefully make some progress =)
She had two more firsts today - she sat up in a HIGHCHAIR and colored! And she did GREAT! That was her PT/OT session today. She colored for over an hour. They let her happily color with her right hand, and even tried to encourage her to use her left hand, with minimal success. After a while she started nodding off, so Reed just sat back in our chair and held her and she took a nap!! That's the first snuggle nap she's taken on one of us since before her surgery in November =) She loooooved it <3 <3 .
Another AMAZING drawing of Julia was dropped off today - I already put my picture together before I came down, but I will be sharing this tomorrow <3 Video in comments: a few small clips of her coloring session =)
YouTube: https://youtu.be/0ukD6y1zpq4
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. ******** ~~ 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
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
