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February 23, 2019

Another great day for Julia =) Her vitals are awesome (heart rate 120s, ET mid 40s, BP 122/82).  No concerns medically - still beating the odds for complications with this chemo (*fingers crossed*).  They have been weaning her off Morphine and sedation for several weeks now, and today they just started dropping her Ativan as well.  They did another 4 hour test with no breathing assistance and she did great!  

She slept for the majority of the day, but the last hour or so she's been super alert!  Her eye is open about half way watching cartoons, and she's following Reed as he walks around her bed =) The few times I've seen her eye open, it's been pretty fixed looking inward toward her nose.  I know that's partially because she can't turn her head real well, but it's SO NICE to see it actually moving around like a normal eye. 

She's continued to do her finger family and pet her tiger =)  She's wiggling her fingers all over today!  She "says yes" to cartoons whenever they're offered.  She's still trying to lift her arm (we think) but she's just way too weak.  I guess PT is out on the weekends, but hopefully she'll get some more sessions starting on Monday.  And Reed and the nurses think they're starting to see her do a pretty consistent head wiggle sort of thing.  It's definitely above and beyond a normal breathing motion, but they're not 100% sure what she's trying to do.  She may just be trying to move it, but is either too weak or the feeling of the new hardware/limited mobility is weird (or possibly uncomfortable).  This is really the first time she's starting to move her head since her spine fusion surgery 3 months ago, so no one is really sure what to expect.  

But she had a really content day.  Lots of hand holds and cartoons with her daddy <3 

In non-medical news, we had her fundraiser today and it was ~AMAZING~.  (Though Reed saying she was holding out "mommy finger" and mouthing "mama" this afternoon really makes my heart ache!) But the event was a huge success.  We had a great turnout, tons of tickets were sold, and the tables were filled with over 130 awesome gift baskets!  The room was decorated in Julia pictures, and Julia centerpieces, and Julia drawings.  Kids were coloring Julia warrior pictures.  It looked like 50% of the guests were wearing a Julia shirt.  Gabriel in his little "Be your own hero" t-shirt with his "Brother Gabriel" name tag was a huge hit (especially with the ladies... it's those round kissable cheeks!)  I don't have a final tally of what was raised, but I'll share it in a post once I know =)  The support for Julia is just amazing.   

The SWEETEST 4 year old came up to the table with only 2 dollars (of his very own money!) and asked if he could buy a single raffle ticket for Julia <3 Omgosh, talk about heart melting.  So many people generously donated, and then just handed off their raffle tickets to another family (or very grateful kids!)  And it was just so nice to meet so many of you in person!  So many friends were there... coworkers, my dads old clients, people I haven't seen in over a decade, old neighbors I haven't seen since I was a kid, SO MANY of Julia's new Facebook friends (one family came all the way from MAINE!  We're in Pennsylvania!) 

Everyone had such wonderful things to say about Julia, and how her story has positively affected their lives. So many people say they are following along every day, and pray for her... and believe they're witnessing a miracle.

   It was really a wonderful day.  THANK YOU to everyone who came out to support Julia and our family.  Thank you for being so generous with your time and money.  THANK YOU to all my friends (and complete strangers) who put in countless hours to make this a success.  I've never planned a raffle, so I know I don't even fully appreciate the time it must have taken... I'm thinking of the logistics that goes into something like this and even that is wearing me out!  (I know my friends don't like to be tagged, so I won't... but I want to... Laura is amazing.)  

But seriously.  Thank you for the HAPPIEST DAY our family has had in a VERY long time.  I'll have more of our little warrior tomorrow <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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