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February 8, 2019

What a day, after yesterday.  Outside of giving medicine, Reed slept for 16 hours last night!   I think it was so much stress and anxiety for so long... finally a small amount of relief and hope and he was just out.  

Julia's vitals are good today.  Heart rate 115, oxygen saturation high 90s, ET 40s-50s depending on if she's being bothered, BP 107/69.  Today was mostly unremarkable, no fever, no concerns (yay!).  Her eyes are both reacting as they have been (left pupil normal, right eye not at all).  Now that her hair has mostly fallen out, we're able to see that the halo pin holes behind her left ear don't look great, especially compared to all the other scars on her body.  It's a pretty alarming scab, and it looks really deep.  But the wound care team looked at it and they say they're not concerned at all - it's healing; and they've added an additional treatment to promote faster recovery.  It was just unexpected when all her other scars look great.  

And I think we're going to just shave off the rest of her hair this weekend.  My friend offered to do it... but it fell out so fast on its own, there's only a few stragglers left over.  I think she will look better once it's all taken care of, rather than this in-between state.  So tomorrow I might be posting a picture of our bald little fighter <3

Reed thinks he saw her turn her head a little today, but he can't be sure.  But mostly, she's really starting to move her jaw and tongue a LOT when he gives her medicine!  So much that she is actually pushing it back out kind of being a pain in the butt =) So not only is she continuing to do small movements, but they're purposeful!  

Julia has received so many thoughtful gifts over the past two weeks.  There are so many I want to share =) I was hoping to get some pictures this evening... but I'm just exhausted.  It's only 10:30 and I can't stop yawning.  So I included some pictures of Gabriel with all his new Blizzard gear he and Julia just received!  (Blizzard is the creator of many of the computer games Reed and I have played for a long time: Warcraft, Overwatch, StartCraft, etc. I assume one of our friends wrote to them and told them about Julia's condition, so their employees sent a a really nice letter and a box of 'swag' for the little ones!  Gabriel is in his new onesie, sitting on his new blanket, and playing with his new furry friends <3 )

And to answer a few questions from last night: The next round of chemo starts the 22nd.  It will be another round of the same medicine over 5 days.  Recovery time is expected to be a little slower each time.  We're continuing all the same alternative therapies, and still talking about adding some others, but nothing official yet.

So that's it!  We're REALLY hoping for a little peek or maybe some finger/toe wiggles in the next few days <3 

(And I really appreciate all the messages!  We're a bit behind getting back to everyone, but we're working our way through them.)

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. ********************************  ********* 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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