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July 15, 2019

Julia had a really good day.  Her vitals are all great, no vomiting at all - so this is several days in a row with nothing.  Still no indication of what caused her fever on Friday.  They delayed chemo today, but round 9 starts tomorrow.  They say she seems to be recovered enough to go again..  And apparently she found the medicine patches they put behind her ears, so of course she's tearing those off.  

She had a really great playtime.  She had her coloring paper taped to her table - she tore if off and threw it off the bed, then clapped.  And then she carefully put all her crayons back in the box.  She was more interested in arranging those than coloring... but great PT!  I guess Child Life will be coming by with a craft tomorrow to see if she'll participate.  She might be too tired with chemo running.

While the nurse was changing her diaper today, Julia started swatting her hands.  The nurse asked her to "be gentle!", and Julia shook her no finger and SAID "No!"  They had a hard time not laughing at that.  It was just way too cute.  In fact, everyone has commented on how verbal she's been today.  Not a lot of word-words, but so much sound getting around the trach.  She just seems to enjoy hearing herself make noise, which is awesome.  Reed started referring to it as the "Julia horn".  (This is the same guy who called her "Milk Tick" when she was an infant... not the best with pet names.)

I participated in her bath tonight, but I did not change her trach strings.  I had a very long post written up for tonight - a lot about why I'm not going near the trach again.  But now that I'm down here, I don't know if I'm committed to that position.  For now I'm just taking a break from the trach.... I need to distance myself after the horrible week last week.  I told Reed to not even ask if I'm doing it tonight - that I just wanted to visit and not be pressured - and he didn't.  And actually, I was just about to type how I had decided earlier to not even be in the room, but once I was here, I figure I could at least stay and be typing this. Maybe start to desensitize myself again.  So I did that while the nurse and Reed did her trach care.  But at the first alarm I left the room.  I walked as far down the hall as I could... telling myself I was far enough away to not hear a code blue.  I came back several times to look through the window, and every time I rounded the corner I was expecting the light above her door to be flashing.  Even the food alarm, which I should recognize, is freaking me out again.

Clearly I'm having issues.  All of last week was very traumatizing, and I've taken several huge steps back in being able to do this. 

Anyway, Julia's done her bath and trach care and now she's a happy (tired) fat baby again.  

Short video in comments because hospital internet.

YouTube: .


. ********** ~~ Julia Adams ~~  ***********    ************* Official Links ************* **************************************

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

Julia's official 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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