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October 7, 2019

Big therapy day for Miss Grump Face. Speech, OT, AND PT, all visited. They were all shorter sessions, but she did all three for the first time in a long time. She also had a port needle change, so that's a whole thing that she hates. They numb her first, but she has to be held down and that never goes over well. So by the time PT got to her, she was tired and grouchy and pretty much over being told what to do <3 Speech came in first and worked with the communication board. Just working on pointing to concepts (yes, no, more, tissue, trash, etc.) She did pretty good =) Then with OT they practiced fine motor control with a little gear puzzle. They worked with her in bed today, and gave her a break from the chair. And then PT got her sitting on the end of the bed and they were testing the .... brain fail... stretchability of her foot. That's not right. But like, after so long in a bed, and not using your feet, they kind of drop forward into a relaxed pose and get stiff. For a while there she couldn't flex her foot at all. I have a video somewhere (I should find it) of me trying to flex her foot - way back in January. I could flex it like, 15 degrees and her poor little leg shook and shook from the strain. So for a while she was in those braces to keep her feet flexed at night, but when they put her on hospice they stopped the braces.. obviously there was no reason anymore. But then as she came out of coma, the braces were sometimes on, sometimes off. I guess eventually PT decided that she kicked and moved her feet so much on her own that the braces were minimally useful, and likely very uncomfortable. So anyway, it's been a few months since they tested the flexibility of her foot. Last time she couldn't quite get it to 90 degrees (where it could stay flat on the ground for standing), but today she got it to that neutral position just fine! They mentioned they will "try some standing" in the near future. This will likely be extremely uneventful, and probably just her putting her feet on the ground while sitting, but still! She continues to make great progress =) So 3 sessions and a needle change later, and we had the GRUMPIEST little thing. She finally took a much needed nap with some Ativan, and woke up right before I got here to visit. Since I've been here, we've had the HAPPIEST Julia! Smiles, and waves, and kisses... happy happy happy. =) . We just did her weekly trach change. My progress goal is actually looking at the stoma. So far I've removed the trach, and once I've held the trach while Reed did the strings (I can do the strings fine, and I can remove the trach with a lot of carrying on...). But I have a hard time looking at it... I apparently have a hard time with unnatural holes... leading to vital organs. So I filmed the change (which went fine) so I have something to look at. Right afterwards, Reed was like, "Now that that's done, you should know she decannulated again today" (trach came out). The one and only time I saw that happen... it was not pretty. I guess Reed was sitting here on his computer and noticed she started sounding different. He got up and she was actively throwing up. So he hit the nurse button, like usual, but then went to wipe her vomit and noticed her trach ties were undone and the trach had been yanked out. He did everything perfectly, he put his hand under her upper back and lifted her up to expose her neck, and he was ready to just calmy put it back in... but the nurse was already in the door for the vomit and she fixed it with no issue. Julia did really great for having her trach out. Her oxygen saturation went down to 85% (which is totally safe). She gagged a bit, but her color stayed fine and everything. Even the nurse commented that Reed was calm as could be, during and after. Everything was just matter of fact. Trach out... put back in. It sounds so simple, but it's such a huge deal to me. I would have totally freaked out, then I would have needed to lay down for the rest of the night. It's ridiculous. So I guess they made a group decision to not tell me until after my involvement with the trach change was complete... probably a good idea. But she was fine immediately after and it was a complete non-issue to Reed. ~~~~ But after her big therapy day, and trach change, and bath, and night vitals... this princess just can't keep her eyes open anymore. They gave her some Benadryl to help with her itchy head and she's totally going to be out in 5 minutes <3 Video in comments of happy Julia being tickled by something on a cartoon =)

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