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October 8, 2019

**** Please read video disclaimer before watching **** Julia has had a pretty good day! She slept well last night. Vitals are all solid. She's been on her T-piece all day (similar to HME). She's had several good naps, and a few cranky periods. Lots of hugs and smiles <3 No real barf today, just a bit of spit-up. They are discussing moving up to a larger-sized trach. The think this one is getting to be a bit too small, and might be tickling her (causing more gagging). Also, this is day TWO in a row that she undid her velcro ties >:( Reed heard her do a weird gagging noise, and got to her before the trach came out. But she has definitely progressed from just scratching off the anti-nausea patches behind her ear, to fiddling with the trach ties. I guess the team is going to discuss options to prevent thisl. We don't need miss Julia removing her trach every day because she's contrary. The big news is she had a really fantastic (though hard to watch) PT/OT session! It was about an hour long, and was entirely sitting practice. They commented that she's doing very well, considering her situation. You can see her move all four limbs, and even attempt to put weight onto her right leg (you can see it shake with the effort). This is sooooo good for her. She's probably going to be sore tomorrow from today's workout =) Reed said that she even reached for one of the coins they're holding up, and successfully put it into the piggy bank, but of course she did that during the 3 seconds he wasn't filming. She really did a fantastic job! Hopefully over the next few weeks, she builds up to being able to handle a full 3 hours a day (though it won't be 3 hours this intense). ~~~~~~~~~~~~~~~

Video Disclaimer

~~~~~~~~~~~~~~~ I had some reservations about posting this video. It's not a typical "happy" video. It shows the reality of rehabbing a very sick little girl. Some may be uncomfortable with how she looks, so I wanted to give a heads up first. You'll see:

--- She's very wobbly (especially her neck - sometimes she swings around wildly and her head flops unexpectedly)

--- Her eyes are droopy (she starts tired and becomes totally exhausted by the end)

--- Her mouth hangs open (remember she breathes through the trach)

--- She looks very pale (it's the lighting, I promise)

--- Her legs shake (she's not in pain [look at her face], it's just effort)

--- And I believe there is a tear or two

--- There are definitely no smiles Please remember, this is the first real unassisted sitting practice she's done since last November, and she's having to overcome these major obstacles:

--- Almost a full year of bed rest

--- Stroke, with left-side weakness

--- Spinal fusion surgery which was never rehabbed

--- 12 cycles of intense chemo that ended just two weeks ago

--- She was only 1 when all this started Because her face looks a bit unnatural, with the lighting, slack jaw, and lidded eyes, and she's oddly wobbly, a few people I shared this with (including me) found it uncomfortable to watch. I try to share happy Julia videos, and this definitely isn't that (except for the very end <3) But the "really good" doesn't have much meaning without the "really bad". Right? So this is where she's starting. Hopefully in a few months I'll be making a comparison video showing how far she's come =) So I'm hoping most people can watch this and see what a great job she's doing, and how awesome these therapists are =) They have a very difficult job... physical therapy is hard enough with someone who can communicate and who understands the benefits. It's way more difficult with a toddler. They do their best to sound happy and distract her with toys / give her objectives, but in previous videos, some people have mistaken this for being sort of heartless and uncaring. This is most definitely not the case. They are professionals at helping children get better. Julia will be a 3 year old in less than two months... I know we all want her to be able to play again. This rehab process is necessary, and much of it will suck. I know watching this, we'll all want to scoop her up and put her in bed and tell her she never has to strain or struggle again... but then that's where she'd stay. In bed. Forever. As hard as this process is going to be for her... it's what we want. Thank God she's still here to struggle through rehab, right? =) So try to look past the sad part, and see how hard she's working =) TL:DR: Please don't post a bunch of comments about how mean the therapists are. So if you prefer happy Julia videos, consider skipping this one and I'll post a smiley one again tomorrow <3

(Most of that was for our Facebook followers...)

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