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February 21, 2019

Julia had another great day.  LOTS of sleeping - about 20 hours.  Vitals are just fine: heart rate 120s, ET mid 30s, BP 134/84.  No concerns as far as common chemo complications (like infection).  She's still in the thick of it as far as low blood counts... but so far so good.  

She's been breathing "room air" (no extra oxygen) through the vent for over a week and is doing great, and the last few days they've been lowering the breath assistance (breaths per minute that the vent guarantees for you).  Two days ago it was at 20, yesterday they lowered it to 12, and today they  lowered it to 8.  She's doing all the other breaths just fine on her own!  I assume the plan is to drop it down to no vent assistance, and then they can consider options with the trach (but no one has actually said this).

In between all of Julia's sleeping we've had ONE ALERT LITTLE GIRL!  She's made huge improvements every day for the last 3 days, and the streak continues!  This morning is the first time we've seen her move her foot since December =) It's little tiny wiggles, but just like with her hand, it's there and it's unmistakable.  And this evening it looks like she's been trying to lift her right arm.  She is NOWHERE near strong enough (she hasn't used it in 3 months - since the surgery in mid November), but her wrist keeps rising about an inch (maybe not even) and her fingers stay down, so it looks like she's trying to lift her arm and is just too weak.  

We're going to talk to the team tomorrow about a super mild form of PT, since she's clearly interested in moving again!  This little girl has lost every ounce of muscle.  Her calf is literally just skin and bone - there's absolutely no muscle; it's a straight cylinder from her ankle to her bony knee.  So hopefully something official, but not super straining, can start again =)

And in addition(!) to the foot and wrist movement, she's been spending a LOT of time holding daddy's hand, and she has started stroking it with her little thumb!  She used to do that all the time when they would hold hands and now she's doing it again!  It is the most precious thing ever <3 <3 <3

And she never really got to the point of saying "Yes", but to answer yes to something she would say "mmmm!" and like, lift her chest up all excited.  That was just her version of yes (but she had "No!" down just fine!)  And she started 'saying' yes again today =) We can see her mouth move in her typical 'mmmm' motion, and her whole torso moves like she's trying to make the sound and gesture.  She has immediately 'said yes' to, "Do you want cartoons?" and, "Do you want kissies?" every time!  (And of course immediately got cartoons and kissies!) AND during the middle of the day she was asking for "mama" and "baby"!!! Over and over and over!  

Her oncologist was in there today and got to see ALL of Julia's physical improvements =) She was asking Julia to say mommy and daddy, and asked her to do her finger family, and Julia did!  Our doctor was THRILLED at Julia's ability.  She was just so happy and all smiles!  She said of course no one knows exactly what is happening, but regaining abilities is not the sign of a progressing disease...

I just can't come down from this high.  Yesterday was the best day ever, and now today is the best day ever.  I mean... just look at this video.  This is NOT the same girl from a week ago.  She's moving her hand like it's nobody's business, and she's actually sucking on her pacifier again!

Youtube video for non-Facebook followers:

. . . ********************************* ********** 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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is everything ok?

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