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March 10, 2019

Our little one has to be EXHAUSTED.  She was up all night and all day puking =( She would get to sleep for a little bit in between, but probably nothing restful (same goes for Reed, who plays a very active role in her day-to-day, including suctioning and clearing out her trach every time she's sick or gurgly). Still no one is sure what's causing her vomiting.  Now constipation is definitely a possibility as it's been a couple days.  They've given her some more meds (oral only, unfortunately) to try to help there, and they switched her anti-nausea meds last night.  But so far nothing is really improving anything.

I hate when she throws up.  She hates it, it's miserable.  And I know it would be terrifying for an adult to throw up like that... laying on your back with no ability to turn your head or anything; not even enough strength to spit it out. But when you get older you realize there is a risk; like choking and dying... does a toddler know this?  Is she scared while it's happening, or just uncomfortable?  And it's scary (for me) to watch, because all her alarms go off, and what I assume are important vitals start to drop, and the nurse is all around the bed trying to suction her out, while Julia's face gets red and she starts crying.  Ugh.  

They've stopped putting her flat on her back at all, due to the frequency  So now she's either 'sitting up' (max it's like, a 30deg angle), or on one side.  It helps the vomit run out a little... but not a whole lot.  It's getting down in her trach, and it's a whole production every time she pukes - bath, new gown, new trach tubing & strings, etc. The did an X-ray of her chest today, just due to all the vomiting.  So far it looks good and it doesn't look like anything got down into her lungs . But it's always a risk.  Other than that, her vitals are still good: Heart rate elevated today in the 150s, ET high 40s, BP 107/65.

As far as I know, the plan is still chemo tomorrow.  The nurse doesn't think that will change with all her throwing up.  I know it will make her extra miserable... but obviously the only real important goal here is to keep up the progress with the cancer.  So hopefully we can at least keep her comfortable. Physically she has starting responding to 'push down' when we're holding her right arm up.  She can't lift it up noticeably, but she's able to push down the slightest bit.  She seems to enjoy that game.  And it's really nice to feel that little bit of strength!  And on FaceTime I asked her to wave to Aunt Charlene and I held her arm up, and she gave lots of good waves.  

And I found a great app on her iPad - you play the notes to a song just by touching the screen (anywhere, and with any number of fingers, which is perfect for her ability level).  She LOOOOOVED being able to visibly interact with something for the first time since November!  She tapped the screen once and saw something happen, and immediately got the hang of it.  She was poking with one finger, and then hitting with all 5.  We played through like 20 songs.  I tried with her left hand, and she did OK -- she tried, but she clearly has limited control.  In the video, I'm just holding her arm up to the screen, she's doing 100% of the movement =)  It was really nice seeing her PLAY.  

And then I held her hand up to my face (in front of her face) and asked where my nose, ears, mouth, eyes were.  And she found them with her eye before attempting to point.  So there is no question that she can see (at least with one of her eyes).  And both Reed and the nurse (and I think Charlene on FaceTime) said they've seen her right eyeball move just a little bit, but I haven't personally seen it.  Still no response to light, but some sort of movement is another great step forward!

Oh, and Gabriel was throwing a fit over FaceTime, and no one could get him to calm down, not even me or Reed.  But I held the phone up to Julia and he was happy.  He loves his big sister <3 <3 

YouTube video:

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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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