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October 6, 2019

It's the 6th, so we've reached another month anniversary since the awful news that she would not live to see the next week. And I don't even need to check to confirm that January 6th was a Sunday, like today, because I'll never be able to forget any detail of that horrible early morning phone call. I guess they had done the MRI the day before, after she stopped using the right side of her body, but wanted to talk to every professional involved before giving us the news... they don't take telling parents their child is dying lightly. So they discussed every possible option before letting us know there was no hope left. But, 9 months later, she has finished 12 rounds of intense chemo and is now resting up to prepare for rehab!

. I was SO encouraged by her big day out yesterday that I wanted to bring Gabriel down for a visit. We want to be extra careful with germs, even though her counts are good. But I was hoping for at least a stroll around the hospital with both of them. She has been really enjoying seeing Gabriel's pictures and videos (and of course FaceTime when he'll sit still) so we know she'd love to see him. I got him all ready to go, with a bag of goodies for Julia, but she actually had a pretty crappy day! She had an awful night's sleep last night - stayed up super late, woke up a dozen times throughout the morning... she was only on her HME for an hour or two this morning, and they only got her into her chair for about 20 minutes. She was so grumpy, and swatty, and fighty, that hey put her back into her bed and hooked up to the vent, with the hopes she just needed a decent stretch of restful sleep. But she fell into such a deep sleep, and was so exhausted, they wanted to run labs again "just to check". Her vitals were still fine, and no fever, (though several big barfs)... but she's been super tired and cranky before, so I wonder what they saw today that prompted a blood draw, but I guess just being over cautious. Everything turned out fine - counts (related to chemo) are all still great, still no sign of infection, and things like salt were all fine. So Gabriel was all dressed and ready to go see his sister, but she just slept and slept and slept. She finally woke up around dinner and we decided to just let her rest. No need for two big days in a row. But hopefully someday soon we can at least get a side-by-side stroll through the halls <3 But since she woke up from a loooong nap, she has been MUCH better! So, waiting for surprise lab work was nerve wracking, but it looks like it was just a cranky toddler who needed a nap. Since then, there have been plenty of smiles and cuddles =) ~~~~ Video in comments - a surprisingly happy baby during her bath! Which is SUPER unusual... And hopefully for her 10 month anniversary she will be in acute rehab!

********** ~~ 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): || Coupon code: danaboyd

Chordoma Foundation:

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

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