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August 18, 2019

FaceTiming with Julia as I write her update <3 She thinks it's the best ever when I turn the phone to her kitty!  And she's enjoying watching Gabriel play with his toys (...her toys?).  She waved for like 20 minutes straight, and now she's showing me Tiger over and over... and over and over.  And Gabriel is dividing his time between cartoons and his sister... it's so sweet how he says "Julia" now - I need to try to get it recorded.

Vitals are OK.  She got some platelets today.  And her heart rate is elevated again so they're starting some more fluids.  She's had a couple big barfs, which can dehydrate her pretty fast.  She even needed string changes early in the morning because they just got ruined.  So she had all her care done at 6am which wore her out and messed with her sleep schedule.  So she's been sleeping much of the day.  Her blood counts are starting to come back up, so she should start feeling better in general. 

She went on her HME at 9am and stayed on until 6pm - 9 hour day.  She coughed the whole time and was kind of miserable so they finally took it off so she could rest.  Reed even tried to get in bed and cuddle to try to calm her down, but she pretty much just kicked him for 45 minutes.  But we're still super happy with 9 hours.

She's getting ready for her evening care (bath, new strings, trach care), and then I guess they're going to try to get her to do an activity since she's been pretty lazy today.  She has some new Peppa stamps to try out, so maybe they'll setup her coloring table with some stamps =) And hopefully as she recovers, we can look into her first stroller ride this week!


School is starting soon, I guess the week after next.  I'm interested in some personal experiences from families with immune-compromised kids.  What did you do during the initial school germ season?  How much did you isolate?  Mostly trying to figure out what to do with Gabriel... He's been with Charlene during the week, and home with me on the weekends.  She has 2 kids who will be starting school on Aug 26.  With Julia so close to being done chemo, I'm just trying to figure out what is reasonable with Gabriel.  

And actually - parents of kids: Do your kids pretty much definitely get sick when school starts, or is that an exaggeration?  Julia is our oldest, and I don't really remember being 8... so I have limited experience to draw from.  Are 'back to school' colds definitely something for me to consider?  If so, is it something you experience to hit in like... the first 2 weeks?  First month?

~~~ Video is Julia happily requesting her iPad!  And then I added one of Gabriel right before his sister left for the hospital, and then (a super happy!) Gabriel now - he's grown so much in her absence <3 And they're some good baby giggles =) 


. ********** ~~ 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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