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July 2, 2019

The sleepiest baby ever only slept until 2am.  Then she was up until 7, took another 2 hour nap, and then was up all day.  She had moments of happy and giggles, but switched to aggravated and fussy pretty quick.  They're trying to avoid medicating her to sleep (though they're OK with Melatonin, which does nothing, and the sleepy side effect of Ativan for her nausea).  

She had Speech and OT today.  Speech continued to work on communicating with the picture board, with which Julia finally cooperated.  She appropriately pointed to the tissues picture a few times.  Speech also asked Reed to continue the make-believe tea parties whenever Julia wants to.  They want to promote play (rather than just "I need"); and they want to show her that stuff going toward her mouth can be fun for whenever they're ready to try liquid/food again.  So Speech was pretty successful.  OT was not.  They got her down on the floor for a whole 2 minutes, but she threw a fit, so she went right back into bed.  She didn't cooperate at all because she was soooo tired.  So that was a very short session.  They will try again tomorrow.

She did have a nice time drawing on a whiteboard easel that was sent by one of her Facebook friends <3 It is also magnetic, but opinionated baby just slapped the magnets away so she could color.  And a Peppa balloon showed up, which was pretty much the best thing ever.  It came with a white bear, which immediately got chucked across the room... but she loved the balloon!  Now Unicorn and Peppa balloons are attached to her bed =)

*** Will she walk again? ***

Lots of questions about her being (un)able to walk.  Our current understand is yes, she will walk again... someday.  In a month?  In a few years?  Not sure.

The 'known' hurdles we have are:

--- 8 months of bed-rest (muscle deterioration / possible ligament shortening)

--- Spinal fusion surgery (requires rehab / possibly affected her ability [not likely] / likely causes discomfort and/or  pain that she will need to overcome - I'm sure it feels better to just lay in bed (Hard to reason with a toddler)

--- She was only 22 months when bed-rest started (might not really remember how to walk)

--- Chemo wipes her out monthly and she's often too exhausted to really exercise

--- Her physical recovery is going toward many things (killing cancer / recovering from chemo), so it's not all going to rebuilding muscle when she works them

--- She's 2... and doesn't listen to suggestions such as, "Do 15 leg lifts to regain strength"

The 'unknown' possible-hurdles might be:

--- The tumor was/is squeezing her brain steam - has it done any temporary or permanent damage to her ability to walk?  We have no idea. 

--- She had a stroke that affected mobility in the left side of her body.  She clearly has left arm weakness / functionality issues.  She doesn't appear to have the same issue in her leg, but she hasn't fully tried to use it yet so we can't be sure.

--- Possible brain surgery complications.  Her head has been cut into 4 times.  Damage is always possible.  It's not likely, and no one thinks anything happened... but we just don't know yet.

At this point, no one has suggested that she won't walk again.  But because she's inpatient and resources are limited, she doesn't have access to the amount of rehab PT a typical patient would have after something like coma or an accident.  Like, after my dad's surgery, he went into a outpatient rehab center where the goal was 3+ hours a DAY.  Julia doesn't even get 3 hours a week, due to all kinds of circumstances (and limited resources).  

I believe the immediate goal of Therapy is general body strength and recovery.  Her body has taken a beating with all the surgeries, infections, complications, coma, cancer and chemo.  The stronger she gets, the more quickly she *should* be able to breathe on her own, and the sooner we can get this trach out!  So overall strength comes in the form of neck, arms, core, legs, lungs, diaphragm, etc.  It's not a full focus on legs with the goal of walking, so walking is delayed longer than it might be under different circumstances.

From her limited PT sessions, we can see at least a small desire, or possibly instinct, to stand.  A few weeks ago she was sitting on the therapist's leg and her feet were flat on the floor, and she very clearly attempted to shift her weight to them.  We believe feeling her feet on the floor for the first time in forever she was all, "Oh hey, I want to walk!" But of course she had zero strength in her legs so nothing really happened.  (And a few adults who have been on extended bed-rest said the pressure on your feet after so long can actually be kind of painful, so that's possibly a deterrent.)

But in reality, she's only just recently able to support her core and back mostly unsupported - like... weeks.  She's already started wiggling a ton, and scooching, and arching, and kicking, and gaining neck strength.  If she were an infant, I think we'd see this all as normal steps in the right direction!  So I assume that they might try to encourage attempts to stand/walk in the near future.  I will also specifically ask about their plan here when I see the therapists next.


Video (in comments) starts with a cute clip from last-last January (she had just turned 1).  She and Alicia's Riley both showed up to the party with the same froggy pacifier.  And then a short clip of her snuggling with brother the other day <3 

YouTube: . .

. ******* ~~ Julia Adams ~~  *********    ********** Official Links *********** (These are here because of scammers) ********************************

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

Julia's *only* 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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Good morning. I so appreciate the time you take to help us understand currently and long term what’s going with Julia and ultimately with your family. You write so well that I feel like we’re sitting over a cup of coffee as you share and update. Of course, I know little of protocol in rehab and recovery but an idea popped into my head as I read about her feet being on the floor for the first time. The sensation must be so strange. I wonder if a small board with several tiles could be made that Reed could hold and Julia could push against with her feet as she lies in bed. It’s not the same as bearing weigh…

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