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February 25, 2019

Julia's levels are rising nicely.  Her body is recovering on its own now, and she no longer needs the immunity boosters (apparently those were a shot in her leg every day =( ) Which of course she hated.  So they're happy with how her levels are rising and things look like they're on track.  No estimate as to when they will get back up to normal and another MRI will be done.  Possibly end of this week / early next week.  Vitals are fine: heart rate 130s, ET high 40s, BP 112/70.

She's had LOTS of right hand and finger movements.  She wiggles her right foot and she's trying to move her right leg (barely, but she's trying), but still nothing out of her left side.  She did turn her head about 2 inches toward me when I got there =) That seems so insignificant, but it's huge!  It's the first time she's been able to physically follow something she's wanted to see with more than just her one eye.  And both Reed and the nurse saw her do several 'torso shimmies', for lack of a better term.  It looks like sometimes she tries to settle in and get more comfy.  That's ALSO wonderful to see!  For over three months she couldn't move or communicate, so if she was uncomfortable we had no way of knowing.  The shimmies are super weak, with limited movement, but it's really nice to see her try to make herself comfy (we assume),

We DEFINITELY got a few laughs out of her today!  I got her to (soundlessly) laugh by making a funny noise - even THE SMALLEST partial smile, but she started crying a few seconds later so I stopped =( I wish I knew why she cries when she's happy right now... I don't know if she's overwhelmed with emotion, scared because she can't hear herself, or if the trach makes it uncomfortable.  It's so nice to get that reaction out of her, but I don't want to do anything to make her unhappy =(  So more mixed feelings on that.  REALLY AWESOME to see the progress, but not-so-awesome that it seems to upset her.

We're still in progress with nutrition changes, the trach being capped, and PT having a plan.  But they did say holding her might be an option this week, under PT guidance, so that will be the best day ever.

Oh, and one of the nurses she had in January, during the "bad news" time, came back to check on her and was SO happy to see everything she can do!  She cried watching her say "mama" and "dada" and do her finger family =) Julia's been a resident of the PICU for so long she's really won over the hearts of her nurses <3  She had a really good day today =)

And I want to thank everyone for being part of the meal train.  I don't even know who set it up or where, but apparently there is one, and people are dropping off amazing meals at my office a few times a week (in addition to our neighbors leaving stuff at our house!)  Reed is SO HAPPY to eat non-hospital food, and he's the least picky person there is, and REALLY appreciates a good meal.  I'm going to have to learn to cook after this is done, because Reed will be so spoiled that my alternating between pasta and tacos won't cut it anymore.  But seriously, thank you so much for making these meals. I see all the thought and love that goes into even just packing it.  So many people leave notes and instructions, and think of every little topping or sauce; divided into containers, sometimes with a little dessert to share.  It's just so thoughtful...  I've not gotten to say thank you for that, and I never see any of you in person when you drop it off.  So I just wanted to let you know that the meals are SO delicious and SO appreciated.  

Tonight I have a sweet video of Julia falling asleep while FaceTiming with her baby brother (sorry it's so jerky) <3<3

YouTube link for non-Facebook friends:

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