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July 27, 2019

Julia had a good day =) All her vital are fine.  No sign of fever since yesterday morning.  Her blood counts are low, as expected, but already on their way back up - so that's great.  We did mention the concern about Gabriel's cold, and they said they just keep a close eye on Julia and they have options if she starts to show any sign of infection.  But so far, she's doing great, and neither Reed nor I feel any symptoms (but Gabriel is definitely sick - he's coughing and has a running nose and everything).  So... sick baby gets to live with his Aunt for a few more days <3 

Julia was a bit grumpy early on, but returned to her happy self after a good nap.  She's also recently decided that Reed sitting NEXT to her bed isn't good enough... he needs to be IN the bed.  Previously, if she was content watching TV or something, he would just sit in the chair next to her bed with his computer table... but no longer.  He needs to be IN bed at all times!  And if he tells her no, he gets 2-year-old-toddler-mean-face and aggressive bed pats.  It's adorable.  Oh, and whoever sent these Peppa finger puppets - they are a big hit!  She got them a while ago, but they were just re-discovered in her box, and she LOVES them.  They have been on her fingers all day long.  She likes her fabric Baby Shark finger puppets as well, but they are harder for her to manipulate than these plastic ones.  

So... blood counts are on the rise, and a good day for Julia <3  ~~~~

We had a GREAT time last night.  Alicia, Amanda and I ended up going line dancing at Prospectors in NJ.  We were shocked to hear last call.  As three moms with young kids... none of us could remember the last time that happened.  We got home around 3am (which is why I posted early!); and while I didn't drink, it was such a long, deep, total-exhaustion sleep that I was confused when I woke up at 2pm.  During the work-week, I get home way late from the hospital (well after midnight), and I'm woken up bright and early by our contractors (who are amazing... at 8am =) )   And of course on the weekends, Gabriel is convinced he'll miss his only shot at cartoons if he's not up at 7.  So... uninterrupted sleep has been a long time coming.  (I guess we're thinking of going again Sept 20 - that's the next Friday Alicia has kid-free.  So if you're in the area...)

And just because someone commented on it, and I know that means others are thinking it, I figured this is a good place for a short insight into Reed.

Before kids, he was on his computer from the second he got home from work, until three hours after he should have gone to bed, programming or playing video games.  That's literally the only thing he would 'choose' to do (and I mean literally in the literal sense).  Luckily, for our relationship, I also play video games - so we spent more time "in game" together than like, on the couch.  He has his laptop with him at the hospital, so he can program and play games all he wants (more-so programming because crappy internet).  In fact, he can do it more, because I'm not there to bug him to go do things!  But if he were magically granted a "whatever-you-want-decompress" vacation outside the constraints of time and reality... guess what he would do?  And a "change of scenery" likely wouldn't even cross his mind. He'd request a week uninterrupted on his computer, right there in the hospital would be fine, maybe with better internet and no beeping machines.  That's it.

In fact, one time I went away for a weekend trip to Niagara Falls.  He didn't want to go and suggested I take a friend.  I left on Friday and got back on Monday.  We talked about how our weekends were, and then he was like... "I actually feel a little sick and my hands are jittery".  I asked, "When's the last time you ate something?", and he said, "Uhhh, I guess whatever you cooked for dinner on Friday."  So to be clear - he got so preoccupied, that he forgot to eat FOR AN ENTIRE WEEKEND!  And he's still like this.  Sometimes I'll get down to CHOP at 8pm and ask if he's eaten today, and he will realize he has not.  But, "Oh well, the cafeteria is closed. Maybe tomorrow".  And if I don't bring him food, he contently eats the exact same southeast Asia bowl every single day.  And has since November.  And enjoys it just as much every time.

And earlier in our relationship, we got home from a long hike.  We were both FILTHY - covered in dried sweat and dirt, and totally exhausted from the climb and drive.  I couldn't wait to get a shower, and relax, and maybe put on a movie and cuddle on the couch... unwind after such a long active day.  I came out and he was IN BED ready to sleep still wearing all his nasty hiking clothes! I said absolutely not - you take a shower first.  He said "too tired" and rolled off onto the floor, and just slept there all night.  Boots and all.

This is who Reed is.  He doesn't need a change of atmosphere, he doesn't need social interaction, if it weren't for biological requirements he wouldn't care about food, and he can sleep anywhere.  Happily.  I haven't written much about him, but I can confidently say (with the exception of ~0.2% of the population - and that's the real statistic) that he's not like you and me.

Luckily his area of "obsessive focus" has extended to include his children.  He is a 100% selfLESS person. Part of that is conscious effort, part of it is because he's different.  His wants and needs are different - almost nonexistent.  Of course if he could choose a different life, he'd want 2 healthy kids (well, 10 healthy kids if he got his way), and to go back to work, and to have a few free evenings a week to play Warcraft.  But if he had to live this exact life forever, in the hospital, next to Julia, "depriving himself" of normal every-day things... he would never complain.  It would never even cross his mind to complain.  He would be fine.

(Oh, and the few years I managed to get "working out" as part of his focus...  hubba hubba!  I have a favorite pic that I will find and add to tonight's post <3)


Anyway.  That was a long way of saying... he doesn't need to go dancing.  


Picture tonight: Julia soundly sleeping on her side <3 This is just so wonderful to see.  She was always a side-sleeper, and she's been stuck on her back for so long.  (Even when they would position her on her side, she wasn't content - she was likely just not comfy.)  But now she has enough strength to at least turn herself over and snuggle in <3 <3 Video in comments: attempt #2 at teeth brushing. 




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