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May 31, 2019

Short Julia update tonight.  Reed's been home from the hospital since last night with a migraine that just won't go away.  He doesn't get them often - maybe once or twice a year.  But this one is hanging on.  I finally just suggested he go to bed and try to sleep it off.  So I have little guy here... thinking of going down myself after I put him in his crib (but he's currently on mommy's schedule and goes to bed at midnight!)

Ugh.  I just want to take care of Reed.  I want him to be able to rest and relax and focus on getting rid of the migraine.  I want to enjoy the time the three of us have together (even though he doesn't feel great), but it's impossible with Julia in the hospital... even if her nurses are pretty much angels on earth.  You just can't put the guilt aside.  Even now at 10:45 I'm thinking of calling someone to drop Gabriel off somewhere so Reed can sleep through the night and I can go be with Julia...  

The nurse says she's FINE and had a great day, and just got her bath and is likely on her way out for the night, but still.  We haven't been with her all day =(

But I got an update, and Julia had a very relaxing day.  Her heart rate even got comfortably into the 90s during a nap!  That's awesome!  She really gets back to almost-normal for the... 5 days her blood counts start to get back up.  They decreased her nerve pain meds again and increased her secretions meds.  Both HME breathing sprints were for 3 hours and she did perfect.  She spent the day napping, watching her iPad, and coloring with the nurses =) A Facebook friend even sent an awesome Peppa drum kit / music set that the night nurse opened up to play with <3 

I forgot to mention that yesterday I got 95% through a string change!  I got all the way to the final step where I need to do something on the opposite side of her neck - I had no way to support my back while leaning over so I couldn't quite finish.  Next time we will simply swap sides and it shouldn't be a problem.  And Reed held the trach for me, not a nurse, so it was the first time we did her string care 100% alone!  It still sucks, but it's getting easier.  It's motivating knowing she's ready to come home as soon as nursing is sorted out... no way am I going to be the hold up.  The nurse also said we're welcome to bring in alternative trach ties - many people have recommended a chain rather than velcro.  I guess they're MUCH easier to use, they don't irritate the skin if they get barfed on (since it's not like, moist), and they don't cause the skin to get all red and sensitive.  So we're going to get on that stat!

I don't have a new video to share since we're not down there.  I have another coloring one from yesterday... and I thought, "this isn't special enough... they've already seen that".  Then I remembered... just 3 months ago she didn't move at ALL!  So of course "just" coloring is special! 

So I'm added the coloring one to the comments, but with it I'm putting a clip I've not shared before.  I have DOZENS of videos like this from January/February.  This is when the cancer had her in the coma-like state, and we were told to expect her to die at any time.  That the damage was done.  That even if against all odds, they could turn it around or just stop it... the neurological damage to her brain stem was likely devastating and she'd be in a permanent vegetative state.  There would be no quality of life.  

Many people commented saying we were doing the wrong thing... That we were being selfish and that it was time to let her go.  You couldn't help but wonder if they were right.  We certainly had many difficult conversations at her bedside.

But she had been on alternative meds for several weeks, and had just started chemo, and her vitals had stopped going in the wrong direction... she had started to stabilize.  Did that mean the tumor was shrinking and releasing the pressure in her spinal column?  We were trying so hard not to read into anything... but it was hard to not have hope.  

So I would just film myself tapping / stretching / stroking her fingers... hoping I'd move them in some way I'd get a reaction out of her, even if it was just a reaction to something I did.  I never saw anything.  Then I'd go home and watch the videos hoping to see something I missed in person.  I'd film her face, and just her breathing, hoping I could watch it later and see her eyes twitch under her lids, or see her swallow... anything.  For weeks I took these videos with absolutely no response at all, no matter how I manipulated her hans. 

...Remembering that makes a repetitive coloring video much more special =) <3 <3 



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

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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