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February 14, 2019

Day 3 of chemo.  Julia is very tired, but is handling it well.  Vitals are still decent, considering.  Heart rate: 120s (160s if she's annoyed), oxygen saturation has been perfect for a while so I'm going to stop mentioning it - she's been back on 'room air' (no oxygen assistance) for days, ET mid 40s, BP 138/95.  

We didn't catch her with her eye open at all again today, same as yesterday.  We're assuming she's just way too tired.  We have seen her trying to blink both eyes a bit, she just can't quite get it open.  Her pupils are still responding the same: her left is functioning normally, her right is not moving or reacting to light.  Her bolt hole looks REALLY good.  I (finally) agree that it looks like it's just healing like normal.  I took a picture of it, and also got a good one of her original surgery scar up the back of her neck, but my picture today is crowded with Valentine's babies so I'll try to remember to share tomorrow.  

We didn't get any eye movement, BUT I definitely felt the fingers of her right hand twitch!  I was holding her hand still for a while after I painted her nails, and I started feeling her pointer and middle finger twitch the slightest bit.  It was immediately noticeable, because they have not moved a hair in weeks!  And I would sit there and stare at them... and flop her hand all kinds of directions... and press it, and stretch the fingers... everything possible to get ANY reaction out of her, but it was 100% unresponsive.  Today they were definitely twitching on their own (like so small you couldn't even see it, you had to feel it).  And then a nurse came in to do a suction, which she hates, and there was definitely downward pressure like she was trying to squeeze my hand.  I told Reed to look and at that point he was able to actually see it.  It was the smallest movement ever - even smaller than her teeny tiny open eye the other day - but it's there and it's new! 

So even though she's too tired to look at us, we will very happily accept this new movement out of her hand!  There was very real concern that the tumor and/or stroke has done major damage to her body, as far as signals from the brain.  First she moved her shoulders a few days ago, and now she's twitching her fingers - clear signs that SOME information is getting through again =)

In non-medical news - my next big focus with her is nutrition.  I feel like I've looked into all reasonable alternative therapies, and we're happy with what we're doing.  We have a few more than would be combined into a home-made smoothie to go along with the formula she's getting from the hospital.  That formula covers all the bases, but it doesn't do anything as far as immunity-boosting / cancer super-food fighters.  We have a consultation with the nutritionist tomorrow. Mostly to find out what she's getting, and what/how we're allowed to self-administer through her feeding tube.  I will likely be making something at home and bringing it in, (I think) the doctors will just want to know all the ingredients and amounts, which is fine.  I just wish I could like... download all the nutrition information that is out there to my brain.  Nutrition is NOT my strong area... by a long shot.  I started looking into it with my dad's cancer fight, but found the information to be very overwhelming.  There are lots of opinions, many conflicting.  So I'm hoping over the weekend I can come up with a smoothie concoction I'm happy with.  And it doesn't matter if it tastes like garbage, because it's not going into her mouth.  So that's helpful.

And I got a phone call today saying her insurance coverage is being dropped on 2/28, which is super annoying.  It's annoying because I can fix it... it will just take many hours of phone calls.  I have so much I need to be doing with my time, and getting social security to figure out where they screwed up is not one of them.  Even on the initial phone call they said it looked like I applied for "heating assistance" (I did not) and then said something like... "Hmmm, do you know Benjamin Rudolf?"  ... which I don't.  So I'm sure someone somewhere messed up, and it's now affecting Julia.  I'll get to the bottom of it - Lord knows I have plenty of experience from dealing with the VA for dad over the summer... it's just not a frustration I want to deal with right now.  But Julia's medical bills are INSANE, and obviously we can't lose this coverage.  So it needs to be a priority.

Both Reed and I are feeling better.  I went down to the hospital early today.  He said ChildLife reminded him it was Valentine's Day, and let him know the gift shop has flowers.  But "I got there too early and ruined it".  The thought was there.  ...I think.  We had Boston Market delivered for our fancy dinner (thanks Eileen for the UberEats gift card!) And just being in the PICU setting with the revolving door, we watched a 2 hour movie for 4 hours.  But it was a fine day.  Julia was comfortable and content, and hopefully her body is hard at work destroying the cancer

. Oh, and they're both in ADORABLE shirts sent by one of her new Facebook friends <3 I love them and they're perfect!

(Julia has received SO MANY amazing, thoughtful, and creative gifts these past few weeks... I can't wait to share them, I just need to figure out the best way.  But WOW!  My whole office has been completely blown away by some of the things you guys have sent her!!)

. . . ********************************* ********** 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 fundraiser:  T-shirts -

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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