I have two fussy babies. Julia slept for a whopping 30 minutes last night. She was up ALL NIGHT and finally fell asleep at 6am... for half an hour. And then she was already up for her morning bath, she did all three therapies, and HASN'T NAPPED. She is sooooo grumpy. They're starting her on some sleepy meds again tonight to try to get her some rest. But she did GREAT with her therapies, somehow, after no sleep. I know I wouldn't be cooperative if I was so exhausted. She did some sports with speech and OT and pushed some soccer balls into nets =) And then I got here during PT where she was sitting on the floor coloring. Tired, but doing a great job! And then she used her communication board to tell us what she wanted to do, which was color... even though she was coloring. And we kept coloring even after they put her back in bed. And finally I had to turn off her TV and iPad and try to convince her to at least take a nap. Didn't work. She just fussed. Then Aunt Charlene called with Gabriel because HE is miserable. He has a runny nose, cough, limited appetite and now a new rash. No fever. But unhappy little dude. Luckily he's been away from us for a week so we should be in the safe zone. Vitals for Julia aren't great right now, but it's probably from total exhaustion and extreme grumpiness: heart rate 168, BP: 130/81. Her right eye continues to get worse; noticeable decline over the past two weeks. I also believe she is using her left arm less, but that's really only today and it's hard to tell for sure with how tired she is. No space-outs. We should be meeting with our oncologist tomorrow to discuss options. ~~~~ NEW footer links (will eventually be added to footer). Given my exploding inbox, my sister has helped put together two new pages on Julia's website: FAQ and Birthday Info:
--- FAQ updated a few days ago, please take a look before recommending treatment options and "have you tried"'s. Trying to keep time in my inbox limited:juliaadamscancerfund.org/faq --- "Birthday Bash" details also here <3 If you'd like to help make Julia, Gabriel and cousins' upcoming joint birthday extra special, please see details: juliaadamscancerfund.org/birthday-bash-2019 ~~~~
Video in comments <3
YouTube: https://youtu.be/cQmZeypMxEk
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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 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 2018. You can find them all on my Facebook page or Julia's website <3
