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March 26, 2019

Julia had a good, very ALERT day today!  Her vitals are great: heart rate 120s, ET high 30s, BP 99/56.  She vomited once this morning, and then once when she got excited (so we won't count that).  She's getting hot and cold easily, but they said that could be a number of things, so they're not concerned right now.  No fevers, and blood counts are doing great.  

She's definitely becoming more aware, and is easily agitated.  So that sucks to see sometimes... she's really trying to communicate something and we just have no idea what she's saying.  She's holding her pointer finger up and doing, like an "O" mouth.  And she's very adamant about it!  But we have no clue what she wants.  We started looking at this communication board her friend made for her, and I'm going to look into some baby sign language this weekend.  Oh, but she did finally make several noises around her trach (just noises, not talking), and I think she startled herself!  No word from speech therapy today, but hopefully tomorrow =)

She was really trying to MOVE today!  She was on her side for a bit and she's really doing her best to move her right arm.  The whole arm!  It kind of flops, but you can tell she's putting everything into it.  She's also trying to move her right leg!  She's pointing at things, and trying to turn her head to see daddy, and nodding 'yes' to questions (or 'no' to anything the nurses ask!), and doing funny faces we ask her to do... Oh and her FAVORITE thing to do right now is wave BYE to the nurses.  She is more than happy to see them leave... every time <3 

And I don't know what the heck Peppa Pig is... but she loves it.  We never watched it at home.  One of her nurses turned it on a few weeks ago and Julia is hooked.  She gets SO excited when you ask if she wants Peppa Pig.  She doesn't want any of her "toddler songs" that we used to play for her, it's only this pig!

I wasn't sure which video to share, so I just put two together.  The first is of her moving her arm and leg!  And the second is when she got to FaceTime with Gabriel.  They were both waving at each other, and blowing each other kisses... omg it was the sweetest thing ever.  Then Gabriel made a doofy face he's started making and she really smiled big!  (And she got so excited when her cousins said they'd come down soon that she barfed! - that's not in the video.)

... I don't even know what to think about all of this.  She's clearly physically improving, but I'm so scared to put my guard down.  Just two months ago, I was running out of ways to start my posts with, "She hasn't died yet", and now it's like every day she regains a new ability.  I'm in such a daze with everything that's happened... I know I don't fully comprehend what's going on.  

(Everything is posted on my Facebook as well, if that's easier to follow!

. . . ******************************** ********** 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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Diana Miller
Diana Miller
Mar 27, 2019

Amy Largent I just want you all to know that I'm praying daily for Julia and I feel a connection to her thru my prays. She has truly stolen my ❤. Praise God for the already answered prayers and I thank him for all the blessing he still has coming. God bless you all!

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