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February 18, 2019

Julia has had a really alert day!  It's wonderful because she's IN THERE, but it also kind of sucks because she's not always happy =(  Her vitals are still good today, but they can get pretty elevated when she's upset.  They are sure she's probably uncomfortable from the chemo, and she's VERY tired!  In fact, she just started yawning again today!  (I have no idea why she stopped yawning... like if it was just another function suppressed by the tumor)  But that's new and fantastic!  Heart rate 130s, ET 30s, BP 120/89.  

She's REALLY trying to communicate.  Which is awesome, but she is also getting very frustrated and upset =( How many 2 year olds wake up in her condition... unable to see out of one eye, unable to move, unable to talk, unable to be held, likely in some amount of discomfort... I can only imagine she's confused and scared.  

I asked, "Can you say 'mama'?" and she very clearly mouthed 'mama'.  But there was no sound (due to the trach) and she started crying =( So I didn't want to share that video. I assume she's frustrated that she's trying to talk and no sound is coming out.  She was getting more and more upset as I tried to communicate with her, whether asking if she could say something, just counting to 10 with her, or playing 'daddy finger' on her hands.  Everything seemed to upset her more, so I just stopped and gave her lots of hugs.  Reed finally switched places with me and she started to calm down.  That's when I got this video of her!

YouTube video for non-Facebook friends:

Look at her fingers move!  And earlier in the day, Reed sent me a video of her (barely) moving the fingers of her LEFT hand as well!  This is a HUGE DEAL!  Her left arm was damaged during her stroke, and well before the cancer prevented her movements, her left arm and hand became completely useless.  So this is the first time since DECEMBER she's had even the slightest twinge of movement in her left hand.  The doctors were not sure if she'd ever regain use of that arm at all.  

That actually reminds me that I wanted to mention her sleepy state to her new followers, since some people have asked in comments.  Julia is not being sedated (at least not to an amount that would knock her out like this).  While she IS on a sedative, Morphine, and Ativan, (and RSO), they are all minimal doses mostly for withdrawal purposes - they would barely even make her yawn if she were healthy.  The cancer is wrapped around her brain stem and is applying pressure.  Months ago we were told that as the pressure increases, her alertness/awareness would decrease, she would start to sleep longer, her breathing and heart rate would be affected, eventually she wouldn't wake up again, and then eventually she'd... die.  (Sorry, couldn't think of a more gentle word there. )

So in early January we were told the cancer had progressed too far, it was in an inoperable location, and it was growing so rapidly it would only be a matter of days.  We watched her lose all body function within the span of a week - she stopped moving her legs and arms.  Her right eye stopped opening.  Her right pupil stopped reacting to light.  Her left eye and right fingers held on for another 3-4 days, but then they stopped too.  For weeks she didn't move a muscle, no matter how you fiddled with her.  At one point her left pupil stopped responding as well, and we assumed that the end was just hours away. 

But then things started to turn around... her left pupil started reacting to light, and then a few weeks later (I think... my timeline is muddled), she just barely opened her left eye on her own.  Then she started moving her mouth, and her shoulders.  Just the other day I felt her fingers twitch, but we couldn't see it.  Today we can SEE it - on both her right AND left hands!  

This is so much more monumental than someone just simply coming out of sedation - she is not medically being kept under.  This entire time, I've tried not to read into things... but the cancer had progressed so quickly that she lost function completely, and it seems like every few days she's regaining some lost ability.  Is this a indication that the pressure on her brain stem is continuing to lessen?  Suggesting the tumor is continuing to shrink?  It's hard not to think that... 

She's due for another MRI when her levels get back up to normal, so possibly in a week or two.  I'm so hopeful we will continue to see improvement.  

And I just reread my post and I feel like I just blew past the HUGE progress that is trying to TALK to us!  I asked her to say 'mama' and she did!  She can barely move her body, but as of now, our little girl is definitely still in there, and she's TRYING!


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

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraiser:  T-shirts - Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

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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