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March 22, 2019

Julia had an uneventful day.  She threw up a few times in the morning, but Reed thinks it was really just gagging on snot, rather than formula/chemo.  They suctioned a lot of mucus out and then she's been OK the rest of the day.   They also stopped the extra fluids for the chemo, so they hope the excess mucus slows down.  Heart rate 130s, ET high 30s, BP 119.70.

They're trying to get her on a better sleep schedule, so they switched her bath-time routine to the evening.  So she just got her whole bath (she gets chilly and shivers!) and now she's zonked out.  Until her trach strings get changed shortly. 

PT dropped off a few therapy toys, but no session today.  Charlene and I brought down some stuff as well, but Julia was very minimally interested.  She shook her head no to everything, and really didn't want to do much of anything.  Her counts should be at zero now, so she probably just wants to sleep and not be bothered. Oh, Charlene did read her her FAVORITE book "Don't Push The Button", and all by herself, Julia pushed the button on the pages!  She remembered what to do, and on the page that said "Push it twice!" she pushed it two times =) She really did enjoy that part at least.

I'm working with some experts who specifically help dose RSO for children, and I'm learning quite a bit.  Right now we just buy the stuff and give it to her, but apparently we ca be doing better.  So over the next week or so, we'll be adjusting what it's mixed with (and hopefully how it tastes!) There is also a THC/CBD topical we're going to make to replace just the CBD we're putting on her skin.  I was never confident we were doing this the right way, so it's nice to get this assistance.  

I have met SO MANY people who just want to help, and they've continued to donate their time and knowledge over and over again.  In return I try to share everything I can when I get linked to another child's page (which unfortunately happens a lot).

Right now Charlene is watching the nurses change Julia's trach strings... it's awful.  OMG.  It's just constant gagging, and alarms going off.  Now she thew up all over the place so they need to take them off and start again.  Julia hates this... I'm not even watching.  I'm hiding behind my laptop here while Charlene holds her hand.  I'm never going to get my credits.  It's hard enough to do it because I'm grossed out, but to know Julia hates it, and she cries and squirms and gags... she turns bright red, and has a death-grip on Charlene's hand.  Ugh.  I want to leave this room so bad.  I don't know how Charlene does it.  Give me a confrontation any day... or a legal battle... or tax issues... anything besides this medical stuff.  I'm just not the right person for the job.

Ugh.  I'm sick to my stomach now.  Just listening to that.  I can't even focus on the rest of the post.

I'm going to try to find a cute picture to post and be done with the night!  The pic with her in the bracelets is right after the trach change.  She's exhausted from the ordeal.  

. . . ******************************** ********** 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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