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July 4, 2019

Happy 4th of July!  Julia's super grouchy, but it's fine because she's here for another holiday and she wasn't supposed to be =) We don't have a view of center city since there is a building in the way, but we might be hearing some fireworks in an hour or so assuming they didn't get rained out.

Her hemoglobin was low, so she got some blood today.  The goal is 11.  Yesterday it was 11 and today it dropped to 7.9, so they gave her some help since it dropped so quickly.  Her labs tonight should show improvement (and she should start to feel better).

Other than that, vitals are great, attitude is not.  She is on a steroid while chemo is active and then they wean over a few days.  So it's still in her system.  Two very common side effects are moodiness (anger) and insomnia.  And as she gets more alert and stronger, her mood swings are much more evident.  She was a NIGHTMARE during her string change earlier today (since she barfed on herself).  Reed and the nurse did it and they were both sweating by the end. Julia fought with everything she had - she wasn't in pain... just angry.  She struggled so much she wore herself out by the end.  I mean... on the bright side, it's probably the best PT she's getting honestly.  

Even Reed said he was kind of bummed out the last few nights trying to cuddle her after her bath because she was pretty inconsolable.  No pain, but she would cry and thrash around while sitting on him; but if he asked if she wanted to go down, she clearly indicated no.  So she just wasn't happy anywhere.  And she has not done her HME sprint (for breathing on her own) in several days because she's been in such a miserable mood. But as the steroid gets out of her system she should improve.

But I got down here right after she finally took a GREAT nap so she's been in a really good mood for many hours!  We've done a ton of playing - mostly with her Peppa drum set, and she happily threw a bunch of toys.  Which is an improvement from her "angry coloring"  Reed said she did earlier today.  She also heard Gabriel's voice in a video Reed was watching on my phone and got all excited thinking he was in the room =( She settled for FaceTiming him and really liked it.  We have to stealth-hang up the phone or she gets really upset... she doesn't like people saying goodbye (can't blame her). 

Other than that, she's doing SUCH a good job using her left hand!  I mean... it's still way behind where it should be, but she can easily move the arm around now and it's often together with her right on her chest.  She even grabbed 'baby finger' and 'daddy finger' on her left hand (with her right) when asked.  And she fell asleep with her left arm draped over her eyes!  It looked so natural I didn't even think to take a picture... afterward I realized what she had done.  So that's progress!

And I brought down an adorable headband for 4th of July... but she hated it (shockers).  So... no festive picture.  I'll just grab some from last year in her cute red white and blue dress <3 

Short video in comments of her very happily playing on her Peppa drum set!  I have a few others, but hospital internet is awful tonight.  

YouTube: . .

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

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: | Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

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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