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February 19, 2019

Julia wore herself out with all her movement yesterday, and she's practically slept ALL DAY! She is one zonked out little baby. She gets agitated when they turn her or change her diaper, but she's really just been sleeping. Her vitals are all fine (heart rate 120s, ET mid 30s, BP 129/90). No concerns today. Her blood counts are all at 0 from the chemo, so they expect her to be very tired for the next several days. She got a blood transfusion yesterday, and I think another is scheduled for tomorrow to assist with recovery.

She was alert for just a little bit earlier. She opened her left eye about HALF WAY(!) and definitely looked at Reed. But he only got a few minutes of talking to her and she fell right back asleep =) She's moved her hand more today, so that doesn't appear to be a fluke!

I am SO ANXIOUS to work on her strength... and physical ability... and recovery... and see what movements she can do with a little encouragement... BUT PT/OT hasn't started yet. They said she is just so weak, and she was literally days away from dying, so they want ALL of her strength to go toward beating back this cancer - at least enough to not be immediately lethal. And that makes sense. But AUGH. Seeing these little movements out of her... I just want to work with her!! I want to see SO MANY THINGS that she was able to do just a few months ago! But they said the ONLY thing she should be doing right now is resting. So i'm letting our baby rest.

I sometimes feel like I want to EXPLODE from helplessness!

Oh, and we were officially told today that the doctors plans are monthly MRIs to watch progress, and that the social worker will be discussing "next steps" with us. You have to hit a REAL LOW LOW for something so mundane to mean so much. Just 6 weeks ago her team was coming in one at a time, crying with us at her bedside, saying how sorry they were; they were saying they would not "necessarily schedule another MRI" because they were only focused on her comfort; and the nurses who had gotten to know Reed were leaving him sympathy notes... and now there are NEXT STEPS. This is just so reassuring to hear the doctors discussing her treatment! We know that no one can possibly know what sort of future she has, or how short or long it may be, but Julia kept fighting and her team has rallied behind her again!!

We were also invited to a chordoma weekend in Maryland sometime in April. It's just for pediatric chordoma patients - all expenses paid by the foundation. It's a chance to share information and get your case reviewed by so many leading doctors in all the fields associated with cancer treatment. We're of course going to do whatever we can to make it there - at least one of us =)

So a fine day for our sleeping beauty! Hopefully the snow isn't too bad tomorrow and I can bring down some cute hospital gowns and hats she's been gifted <3

Oh! And I wanted to link to some jewelry. Many people have asked if any jewelry has been made in support of Julia. Several wonderful people have offered to do fundraisers like this, but honestly, some days I just barely make it through all my messages and I don't get back to half of what I'd like to. I was contacted by ~CathysCrtnsJewelry~, an Etsy shop out of Boston that makes hand-stamped jewelry for good causes. She sent some "Julia's Army" example pieces and they're adorable - and I love the hand-stamped look =) I did some research, and I'm super happy with her history and transparency. So I'm happy to share these links with you! Proceeds go directly to Julia's care <3

Julia's Army key chain:

Julia's Army pendant:

Julia's Army cuff bracelet:

Julia's Army washer bracelet:





********** 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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