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October 3, 2019

Julia's had an OK day. She's struggling a lot with vomiting again. She's not quite out of the typical chemo cycle yet, so it could definitely still be that, and this one really did hit her hard. But she's thrown up many times today, so that has to be miserable =( Other than the constant mucus and barfing, vitals are all still great and no sign of that one-day blood infection. She got into her chair again today, despite the throwing up. She had a 30 minute OT session in it. Reed took some video. These videos were at the start of the session, so you can see she's pretty grumpy and doesn't really want to cooperate =( But the therapist is amazing with her, and Reed started interacting and she got much more into it. He considered it a good therapy session near the end... I just don't have any videos of that. But he said by the end she didn't want to stop playing with her porcupine =) You can also see in the video that her head is leaning more and more to her left side. This could be caused by many things, definitely the stroke that affects her left arm (makes sense), but also possibly lack of use, or tight muscles. She CAN turn her head all directions (limited by the spinal fusion), so those muscles work, they think she's just more comfortable this way. This is something that most likely can be worked out in PT. But after Reed took the videos, they did put a blanket roll there on her shoulder to help prop her head up for the rest of the session. But OT commented that Julia is really doing great with her hand positions (right hand only of course). She was holding the quills like a pencil when trying to insert them, and she would attempt over and underhand grip to pull them out of if they were stuck. She also understood spinning / flipping them to get them to fit in. These are things I don't even think about... but OT was very happy and said that's all great signs and progress. She was coughing up a STORM in the chair. Which I'm sure lead to her misery. It was just the change in position probably got everything moving - hopefully the more she gets used to that, the more things will settle down. But she just wore herself out coughing. She's also been on the HME since 9:00 and did great - but that can increase secretions as well. She finally had a few more barfs during OT, and got some Ativan. That didn't quite do the trick so they gave her that Benadryl+something-I-can-never-remember duo and that knocked her out. So she's been sleeping comfortably since the afternoon. . My biggest goal for her right now is to feel better enough to be interested in, and cooperate with, therapy. We need her to prove she can handle this 3 hours a day so acute rehab accepts her. She could do SO WELL with acute rehab... I just hope CHOP doesn't rush her out the door too early to be a candidate somewhere =( They say they won't... but insurance will only pay for her to stay so long. So I'm hoping the vomiting gets under control, and she really starts handling these therapy sessions well. ~~~~ Picture tonight: Julia cuddled with Reed to fall asleep, then he slipped out of bed and she just snuggled in and was out for the night... right on her face! <3 And I'm pretty sure Aunt Charlene is spoiling Gabriel... who apparently now likes Paw Patrol like his big sis =) Video of therapy session in comments <3



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