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March 20, 2019

Julia did not have a great day today.  Today was the worst so far for vomiting.  She was so wrapped up in bibs she looked like a floating head when I came in!  She threw up several times with some blood in it; looks like it was mixed with mucus.  It was dark, so not fresh, but they immediately got her in for another abdominal ultrasound - just as last time, everything looks OK.  They tried to pump her stomach a bit but no blood came out.  So, they still believe it's from the chemo, and other than keeping her comfortable (and keeping feeds down), they aren't concerned.

I've received SO MUCH feedback from other oncology moms about formula changes HELPING the vomiting, so I asked her two new nurses (PCU, not PICU finally) to just change it and stop waiting for all symptoms to settle, which might be never at this rate.  And they said no problem.  So tomorrow the new PCU dietitian will get the switch approved FOR TOMORROW.  FINALLY.

Speaking of finally, PT was in with Julia today for a REAL session!  They worked with her legs: did lots of stretches and range of motion.  They moved her legs all around in her hip joints, and moved and stretched her ankles.  It was much more thorough that we do, and she seemed to like it! I'm sure it felt great!  She also gave several weak high fives TOTALLY on her own - so she moved her arm from the elbow down without any assistance.  She wasn't very good at aiming, but what an improvement!  And several times today she was able to lift her right arm from the bed to her belly... and immediately found part of her trach to play with (which of course made me panic!  But the nurses say most kids fiddle with them.  Eek.)

Other medical news: Vitals decent.  Heart rate has been high today 150s/160s, which could be because she's so uncomfortable.  ET mid 30s and BP 99/62.  No traces of blood in her urine anymore, so it looks like that medication is working well.   She also got another transfusion for platelets.  Her counts are still dropping (as expected), and should zero out tomorrow or the next day.  

And quick update on me here so I can end with Julia!  The pain is worse and steady.  It's definitely upper-left quadrant, and feels deep inside.  Radiates across my back.  It hurts to lay down, to bend, to twist, and to strain (like when standing or picking something up).  Dr. Google tells me it's probably a hernia.  Or like, 50 different cancers.  I called my doc but she wasn't in - the nurse said they will give me next steps tomorrow.  I assume a scope.  It's still tolerable with Motrin and ice.  Very inconvenient.  I DEFINITELY have better things to do than a million doctor visits!  But it is starting to hurt all the time so I should probably get it figured out (so far labs, ultrasound, x-ray, and CT scan are all normal... running out of tests).

So back to Julia! Outside of the barfing, she mostly just slept.  Just a few minutes ago we asked if she wanted daddy to "picks up" (that's the baby talk we'd use at home) and she gave a VERY firm head nod!  We repeated the question to be sure, and she was SURE!  (Check out the first pic for her HAPPY baby face!  She was READY FOR CUDDLES!!) So the nurses picked her up and Reed crawled into bed with her.  She is the MOST CONTENT LITTLE GIRL watching cartoons in Reed's arms <3 <3 No wait... she's asleep.  That was fast.  ... actually I think he's asleep too.  They're both so propped up and warm, I can't really blame him.

So even though the day was rough, she's a tough little cookie.  And some hugs and cartoons seem to make everything OK <3 

(The shirt she's wearing is from one of her Facebook friends - they sent it a while ago, but it got lost in a bag I brought here!  It says "Julia - the perfect combination of PRINCESS and WARRIOR".  It's perfect <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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