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March 23, 2019

Julia had a good day today.  Really tired - she could stay awake for maybe 30 minutes at a time, but then quickly fell back asleep.  Her vitals have been great: heart rate 130s, ET mid 30s, BP 93/57.  They haven't seen traces of blood in her urine in many days now, so they're happy with how that medicine worked and aren't concerned at this point.

As you can see in the pic, they got her into her stroller for the FIRST TIME since October 30th; so 144 days!!  The transition was rough.  It took several nurses to move her with all her connections, and she didn't enjoy it.  She was upset for a while once situated, but after she calmed down, she seemed very content.  They didn't take her for a walk (mostly because she was still connected to so much and her counts are at zero), so they were really just testing to see how she'd do seated up like that. Reed rocked her back and forth (first time being rocked in 128 days(!) - since her surgery.)  She was out in minutes =)  ...Until she gagged on a snot ball and puked all over herself ...and then that whole thing made her poop, which exploded out the sides of her diaper.  SO, she got a bath, all cleaned up, tucked into bed... and promptly went to sleep =) That was the longest nap of the day at several hours. Today she raised her LEFT arm at the elbow several times!  Which is an AWESOME new movement!  She seemed to do it when she was aggravated (like during diaper changes).  She's definitely weaker on that side, and has less control, but she's still getting better.  

And a few random mentions.  Her right eye is still not focusing or reacting to light in any way.  It does seem to move a bit like it's trying to follow the left eye, but it can only move a short distance, and it seems to lose itself and come back to the center where it likes to rest.  Some pictures recently made it seem like she was focusing with it, but really it was just the angle.  In other pictures it's more evident that she can't really move it.  But it's getting better, not worse, so we're still hopeful that a little (or all?) functionality will return in time.

The trach is still in because she's still gets ventilator assistance at night (when she's extra tired - especially while in the thick of chemo).  She's not currently getting any extra oxygen, nor is the vent breathing for her.  But it detects when SHE initiates a breath, and it gives her some extra pressure support by blowing air down into her lungs.  This just makes it easier for her to breathe when she's tired.  If this assistance weren't there, and she were too tired, you'd see her clearly struggle and retract in with each breath.  So ALL the vent is doing right now, is that little bit of pressure support in the evenings.  Since we're in a new unit, I will ask what the plan is as far as attempting to cap the trach / disconnect her from the vent / possibly get her talking.  But in the long run, I believe they want her to be 100% vent-free for 3 months before they even consider removing the trach.

And I came across the comment of someone who is a recent follower of Julia's story (Hi! - I know there are many of you <3 <3 ) and they asked who the people I keep mentioning are:  I'm her mom (Amy), her dad is Reed, and her 1 year old brother is Gabriel (aka Goomba or Bulldozer).  Jonathan is Reed's brother, and Charlene is Jonathan's wife.  They are currently caring for Gabriel full time, and have been since October 30th when we took Julia to the ER.  They have two older kids who are the best cousins to Gabriel <3 

Oh, and Reed just sent an adorable video (in the comments).  He asked her "Where's Julia?" and she gave a VERY confident point to her own belly.  It's so wonderful seeing her be a normal toddler, despite how miserable she must feel! <3 <3 <3

YouTube link:

( Don't forget to follow on Facebook if you'd like to be involved in the converstaion! }

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