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March 12, 2019

Julia's face is all puffed back up from chemo - that's why her cheeks and eye are swollen (I'm not sure why the right eye is affected so much more than the left).  Stats right now are decent: heart rate elevated all day in the 150s, ET high 40s, BP 114/60.

Reed put a bandanna over her eye for several hours (to see if possible-double vision was making her sick), but it had no effect on her vomiting =(  She would wake up out of a dead sleep and start puking.  In fact, she spent all night throwing up again.  Around 4am she started throwing up some blood.  They used her gtube to pump her stomach and more came out.  It was all brown or black - so not fresh.  They said they'd be concerned if it was red, but since it's old blood, they're just getting her scheduled for a full abdominal study to check for all kinds of things (ulcers, twists, etc.) But since her stomach got pumped, and they gave her an ulcer coating medicine, AND adjusted her anti-nausea again, she's been a lot better today.  ... I hesitate to hope she's doing better, because I've thought that several times over the past few days.  Maybe finally an improvement?

I assume that scan will take place tomorrow.  I didn't know this happened until 8pm when I got down here.  Reed has asked for updates on the scan (and why it wasn't done today), but didn't get anywhere.  I have the doctors coming in in a few minutes to talk to us, but it's late and Charlene needs to get going.  So I might not have more info on that until tomorrow.  I'm personally a bit alarmed that a scan wasn't done as soon as blood was seen... but I'm not going on anything more than motherly instinct (paranoia).  In addition, it looks like her constipation medicine is finally going through her and she's had lots of major poops. If nothing else, she has to feel a LOT better in that department. 

They also put her back on the old formula, to remove that factor, until the vomiting is figured out.  So it sucks that she's not on her new nutrition/patches during chemo... but I guess I understand the reasoning.  I just really wanted to optimize this round of treatment.

Physically she's been doing a great job today.  She's really pressing down with her right hand, and she's started grabbing Reed's hand and kind of dragging it back and forth.  So now she has strength to hold something AND move it!   Small physical progress every day.  No attempt at getting her seated in the stroller, just due to the puking.

And despite all the misery, she has had a pretty alert day.  Charlene and I came in and did a stupid dance together.  Julia smiled a LOT and tried to wiggle her body with us =) And a few minutes later, Charlene was doing a silly 5 Little Monkeys skit and Julia just LOVED it.  She was even putting her pointer finger up like they do in the song during "No more monkeys jumping on the bed".  I ended up getting a video halfway through.  Even though we can't hear it, it's so nice to SEE her laughing!!  It has been months and months since we had a happy little girl, and we're getting there again!! <3 <3 

So short update today.  Charlene and I are still at the hospital and she has to get up early tomorrow so we're trying to get out of here at a decent time.  I'll update tomorrow on results of more tests (and my first trach class [boo]).  I don't have time to proof-read, hopefully everything is good!  

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

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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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