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February 24, 2019

A nice day of recovery for Julia.  Lots of sleeping, but also lots of awake time!  Vitals: Heart rate a bit elevated today (140s), ET mid 40s, oxygen saturation has been lower today as well - high 80s / low 90s (it keeps setting off her alarm), and BP 108/63.

She's moved her right fingers and hand a lot - she even twiddles her fingers in her sleep now =) - and she's starting to move her right foot more!  Today we even saw her moving her leg (rather than just the foot), but it's such a small movement it's hard to even see.  We haven't gotten much movement out of the left side of her body really - her left hand, leg, and foot have stayed pretty motionless other than a few twitches about a week ago.

It's definitely possible the left side of her body is being affected by the stroke she had in December.  That's also what may be going on with her right eye (I know I've answered questions about her right eye a lot in comments, but I can't remember if I've said anything in a post).  The doctors aren't 100% sure why her right eye is closed.  A few days after her stroke, her right eyelid started to look 'heavy', then a few days later it just closed all the way and hasn't opened since.  A few days after that the pupil stopped responding to light.  So far there has been no sign of improvement.  

So at the time, they thought it might have been the stroke... but just a few days later, they ordered the MRI that showed massive tumor growth.  With this new information, they changed their theory to the cancer/tumor pressure affecting the nerves to her eye.  This made more sense as the left eye slowly went down the same path (lid got heavy, closed "for good", then pupil stopped responding).  This definitely suggests cancer growth is the cause, since both eyes behaved the same way as it got worse.  At this point, no one can say whether the right eye will gain some or all of its functionality if the cancer shrinks / is destroyed completely.

Anyway, that's what's going on with her eye.  If it does start to open or react to light, it will be a reversal of an issue that started several months ago.  We'd love to see some movement on her left side, any any reaction at all out of her right pupil. Possibly in the days to come we might get something there =)

And a new ... thing that happened today is both Aunt Charlene and I made her cry by singing to her.  At separate times we were singing fun songs like Baby Shark, and it looked like Julia would laugh! She'd ALMOST do the smallest hint of a smile, and her chest and belly would move like she's laughing.  So we'd get excited that she might be laughing (for the first time!), and then she'd just start crying - she'd squeeze her eyes together and there were tears.  It was definitely a sad face.  As far as I can tell, she started to laugh, but then she cried.  I'm not sure if she was so happy to hear the songs, but then got emotional for a variety of possible reasons; or that she tried to laugh and the feeling felt weird with the trach and that upset her?  I'm not sure, but it kind of sucked =(

But I did get to a point where she was enjoying Baby Shark.  Before she got sick, she LOVED doing the hand motions, and she was super adorable and would always interrupt the song, requesting you go back and forth between the mommy and daddy verses before they were over.  So today I sang it and starting doing the daddy verse/hand motions, and she mouthed "mama"!  So I stopped and re-started the mommy verse and she mouthed "dada"! She did that several times and it was SUPER AWESOME!!

So in this last week we've seen her regain her ability to move a bit, and her ability to think (by showing specific fingers), and now we're seeing that she has retained some of her cute personality as well <3

I hope tomorrow PT comes back with a plan.  On Friday they just tested range of motion.  We're really anxious to hear if there is a plan toward being able to hold her again =) At this point she's off all IV medications (they're still being given through her g tube though), and if she continues doing well with her breathing tests, they should be able to cap the trach for a few hours at a time... so if PT/neurosurgery say her neck is safe enough to move again... there should be no reason why we can't hold her!  I want everything to be 100% safe and pain-free, so I'm not in a rush (but I kind of am).  But I'm trying to be patient.

I want to hold her soooooooo bad, but more than that, I can't wait for her to be in Reed's arms again. 

Picture today is of her eye open really wide (while talking to daddy of course)!  And of her in one of her new super-soft hero hospital gowns <3 

. . . ******************************** ********* 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 fundraisers:  T-shirts - | Jewelry: 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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