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October 24, 2019

Another must-see video in the comments! If DuPont isn't itching to get their hands on this girl... they're crazy. Medically no changes. She had a rough night last night just because she was soooo tired. She's weaning off several meds that helped her sleep, so she's probably all out of whack. They are really trying to wean her off her vent (a required step to eventually removing the trach), but she still struggles at night. Without a rate (guaranteed breaths) she's hitting periods of very slow breathing. Not awful, but enough to be uncomfortable and promote restless sleep. I think last night, at her worst, she went 12-15 seconds without a breath, and her oxygen saturation dropped to 85%. At that time she woke herself up and started breathing again, but that's not ideal. So she's probably struggling with a little sleep apnea - more pronounced after a long exhausting day. So they're going to put a very low rate back on, mostly for comfort right now. Getting her off this vent is a requirement for eventually removing the trach. It's a fine line between pushing her and allowing her tired body to recover. No barfing today again, but she did have one small one last night. And they also extended her cuff-down trial to TWO hours today, instead of one, since she did so well =) So some hiccups, as expected, but overall progress! Therapies were meh today. She sat on Reed's lap for OT but wasn't super interested. They woke her up, as scheduled, but she didn't go to bed until 6am today... so... her grumpiness is no surprise. But I'm super happy they woke her up, and I'm super happy she tried =) It was only about 30 minutes of minimal-cooperation. I don't believe speech came by today. PT came by, but they were both sleeping (and she needed it). The whole team is committed to a much better sleep schedule, so we'll start switching her over ASAP - tonight might be a jump start with how tired she is. But no PT isn't holding this girl back! Reed and the nurse worked with her and got her sitting up in bed all by herself! She's totally content playing with her iPad while seated - they even played catch!, of course =) This is the same girl whose sitting video required a disclaimer just two weeks ago, because she was so wobbly it was uncomfortable to watch. And she's had minimal intensive PT, fought a blood infection AND a cold... and this is her progress. <3 <3 So they made a pillow barrier all around her, just like you would for an infant learning to sit for the first time <3 I thought the video today couldn't get any better, but it does! With a little encouragement, lots of practice, and a bit of a raised pillow... Julia SAT HERSELF UP! VIDEO PROOF!! I am SO PROUD of her. You can see she tries over and over and over, and Reed said this was near the end - he has tons of videos of unsuccessful attempts. But she is so determined and finally got it! Her little baby abs are going to be SO SORE tomorrow!! ~~~~ Unrelated: Gabriel has a doctors appointment tomorrow to look into this large lump he's had on his shin for at least a week... no bruising or other discoloration. Because Julia has bone cancer, and I can't use "very unlikely" logic to rule it out... of course I panicked and scheduled an appointment. Hopefully the doctor takes one look at it and just tells us to wrap Gabriel in a bubble because he's a rammy boy. (Speaking of which - he's not even 2, and this little guy need to get into a tumbling class or something!) ~~~~

Workin'-hard, sittin'-up Julia video in comments!

********** ~~ 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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