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August 19, 2019

OK day for Julia.  Heart rate continues to be high (170s / 180s) so they're giving her fluid for the 3rd day in a row - it seems to help.  This has happened, to a lesser extent, the last several rounds of chemo.  So they're not really concerned, though it is staying higher for more consecutive days.  I don't believe she got on her HME at all today - rough morning with barfing, bath, and therapy, so she tired herself out.  And she was in such a deep sleep that she wasn't doing great on her 'daytime' settings so they put her on nighttime settings to help her nap more comfortably (nighttime settings are just a little more support from the vent so breathing is easier).

I asked that they get her hearing checked.  I keep getting the feeling that she's hard of hearing sometimes - like when I walk in the room, she doesn't respond.  She's clearly awake and engaged, she just has no idea I'm here no matter how loud I say her name.  It's been happening more and more lately, though other times she appears to hear pretty well.  So, I'm not sure.  I know some chemos can affect hearing, sometimes permanently.  The nurse said the ones she's on aren't known for that, but they'll get her tested anyway.  They need to do that test on another floor, so they'll have to find a window where her counts aren't low, and she's not puking.  So, not urgent, but on the schedule.

The trainer brought in one of the trach baby dolls to go over some skills and Julia got REALLY excited!  She hasn't seen one before and she was pointing and O-facing and smiling and waving.  She LOVED seeing a little baby!  She kept mouthing "baby! baby! baby!"  She pointed to baby's trach and thought that was really funny <3 She hasn't had the same reaction to stuffed baby dolls, but this one was life-size and realistic, so she was super excited.  I guess the last baby she saw was Gabriel... and she probably can't tell the difference between an actual baby and a doll (or perhaps doesn't know there's a difference?).  Either way, she loved it.

OT came in but she was sleeping.  Then PT came in, but she was already being seen by Speech Therapy.  Reed wasn't in the room so we didn't get details on that, but I hope it was productive - last week wasn't a great week for therapies (can't blame her, she was exhausted).  In the grand scheme of things, not a big deal, but still a little frustrating when she doesn't see any therapist for a few days in a row, and then they all overlap so she only gets one anyway.  But I know therapies in general will pick up once chemo is over, so hopefully just another ~2 months of lazing around.

And the nurse had planned to get her in her stroller to at least sit in the doorway, but she slept all afternoon!  Noon to 6pm, so that didn't happen.  Still hoping that as her counts come back up this week, we'll get to do something fun =) I'll be down here during the day on Wednesday for our meeting, so hopefully we can get her out and about if barfing is under control.


Video in comments of her playing with daddy <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:

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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1 comentário

sophia palladini
sophia palladini
21 de ago. de 2019

Hi, i was just wondering if there was any update on when their will be an MRI or a scan of any sorts. Thanks, as always keeping you in my prayers and thoughts!

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