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August 22, 2019

Julia's doing fine.  She's getting ready for her bath and trach change, which she knows is coming, so she's not happy.

She had a pretty good PT session today!  I think it was occupational therapy and speech therapy, and they worked with her an hour.  That's such an improvement over the 10 minutes of fussing they've managed lately.  She is entering the "good" period in her chemo cycle, and the next round isn't scheduled for another 9 days.  So I guess they are going to take advantage of it, and see if they can improve her eligibility for a rehab center if we decide to go that way.  So the plan is to come back tomorrow, and then every day next week for an hour.  That will be the most intense therapy she's ever done, by quite a bit.

So they played with the toy cash register for the whole hour.  They tried to get her to do different things: turn the knob, grab coins out of the drawer, put them in the slots, etc.  I don't know how often she actually completed the task, but she was 70% cooperative (and 30% fussy toddler), so seriously a huge improvement.  Last week the sessions didn't even last 10 minutes and they were all yelling and throwing.  So this was really great, and it exhausted her so much, she crashed right after and slept for like 6 hours.

Other than that, they checked the skin around her trach stoma - it took 4 people to hold her down... she's a little fighter =)  They also started adding ear drops to try to loosen up all the wax, which I guess ENT will have the pleasure of attempting to remove at some point, and then audiology will finally be able to do a hearing test.  The child psychiatrist stopped by to check on her - they've been working on getting her to hate things less, like by incorporating Child Life - and apparently they remarked that Reed has acclimated "unusually well" to hospital life.  He just assumed everyone would be totally fine living in a hospital.  And he said now the nurses remind him to go eat.... since he keeps forgetting.  (I wish I forgot to eat...)

Oh and Reed sang her a song about how she's chunky and she did the no-finger the whole time =)   


Video in comments of her PT session!  It's three clips together, so you get to see some cooperation, some frustration, some head slaps, some coin chucking, and lots of finger wags.  But even with her (understandable) frustration, it really was an improvement <3 




. ********** ~~ Julia Adams ~~  ***********    ************* Official Links ************* *************************************

Julia's official pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's official fundraisers:  T-shirts: | Children's Book: Jewelry:


Car Magnet:

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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