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June 1, 2019

Pretty good day today for everyone.  Julia didn't tolerate her morning breathing sprint very well, but it was directly off of "night time" vent settings.  So they went right from her most support to no support.  At rounds, they decided to just be sure she's on "day time" settings for a while as a transition.  They think it was just a little too much.  But she did really good with her 2nd sprint of the day.  

She had a lazy day of several naps and plenty of cartoons.  She and her nurse played on her Peppa music set for a while.  Other than a little breathing trouble while on the morning sprint, her vitals have been great. 

She also has a new nurse tonight, and we were just introducing ourselves.  Julia's history came up, and I asked if new nurses are brought completely up-to-speed on a patient, or just given the current important stuff.  She said they try to do a thorough history, and she mentioned that they don't often have patients of Julia's caliber - that they don't often see "kids on hospice do a complete 180". That was really nice to hear... partly because I've always wondered what was being said about Julia when we aren't around - like, are they really optimistic or do they still think this is unbeatable?  So, I read into what she said, and I'll take that reassurance =) 

She was VERY HAPPY when daddy came back today, of course <3 He woke her up from a deep sleep, but it didn't take long for excited-face-smiles.  She was kicking her feet all over, and we played an actual game of CATCH!  It was so nice! We tossed a Peppa (of course) back and forth for quite a while - I got a bit on video.  So nice playing a toddler game with our toddler <3 

Oh, and as we were getting settled, we said hi to all her animal friends.  BFF Tiger was nowhere to be found.  We kept asking, "where's Tiger?" and she'd do the cute little i-don't-know shrug thing, but then point to the couch.  Tiger wouldn't be over there, but we checked to see if she chucked him and he was on the floor or something (he wasn't).  So we looked all over the bed and under the covers and kept asking, "Where's Tiger?" and she kept shrugging then pointing to the couch.  Anyway, just a few minutes ago Reed texted me saying, "She was pointing to tiger."  Apparently Tiger was the victim of some vomit, and he ended up in one of the laundry bags... next to the couch!  So little Julia knew right where Tiger was!  She must have observed the nurses putting Tiger in a bag and setting him on the floor <3 (I'm really REALLY bad at understanding kids... even my own.  But she DID literally point... so that one's on me.)

~~~ I want to share an extremely thoughtful gift we received today.  Libby, a new Facebook friend, owns a scrapbooking store in Indiana, and has been working on several scrapbooks for Julia for MONTHS -- I had no idea.  With them completed, she decided they are too precious to mail  (I don't even want to guess at how many hours [days... weeks] went into these!) so she drove them out to hand-deliver... I'm in PA!  9 hours away!

So we met her, her daughter, and her granddaughter at a restaurant, had a really nice lunch, and then we looked through these AMAZING scrapbooks.  She made 2 small books - one for Julia and one for Gabriel, they are filled with their pictures, and then popouts, and flip pages, and pullouts, and things to touch... And then there are two HUGE books documenting Julia's journey! Each page is one of my Facebook updates - printed in full - with any accompanying photos, and awesome decorations.  I can't even begin to express how amazing these books are - the photos don't do them justice!  It's so nice being able to see Julia's whole journey right in front of me.  In fact, the waitress saw our book and asked about it, and very quickly I was able to give a rundown of Julia's whole story, with pictures - from then, now, and everywhere in between (and explained we'd never even met this family before, and they drove all the way out here to deliver us these books!)  She teared up, and took one of Julia's cards to share her story with the staff...  and she very well might be reading this update tonight <3 (Hi!)

I'm sitting here looking at these two monster-sized scrapbooks... and I know I can't even begin to appreciate the time, thought, dedication, and expense, that went into these.  These are something I will have forever, and one day Julia will be able to look through the scrapbooks herself.  They are just wonderful.  And Libby left us with a bunch of extra scrapbooking supplies so we can finish the days Julia's in the hospital <3 

(Uh oh - power just flickered and there's thunder.  I'm going to update real fast before we lose power.  Video of when we got to Julia in comments!)



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