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March 19, 2019

Julia had a very sleepy day today.  We're 4 days past chemo, so her counts are probably close to zero.  She's going to be really tired the next few days, and probably feel pretty miserable.  She threw up three times today, so no real improvement there.  I'm going to ask tomorrow what the plan is with switching her formula... I know they want to get her vomiting under control before adding another factor, but it's been nearly 2 weeks now.  This could go on for months, realistically.  I'd really like to get her on better formula.  But her vitals are holding steady: heart rate 140s, ET low 40s, BP 111/77.

Today Julia got a REAL visit from occupational therapy!  They inclined her enough that she could (kind of) see.  And they used play-doh to make balls and other thing she could try to grab.  They would show them to her and then put them down by her hand and try to get her to reach for them and push them around.  For being SO TIRED, she did pretty well!  She was definitely trying to grab them.  So she understood they were down there (even though she could no longer see them), and she understood she was supposed to get them.  But her favorite thing seemed to just be to rest her hand on them.  The therapist was being overly animated and really goofy, and she got several good giggles out of Julia!  This is the first time someone else in the hospital has gotten her to laugh!  It's so nice knowing she isn't terrified of ALL the people who come into her room =)

And with that in mind, Charlene and I are going to go to the craft store tomorrow to try to fashion a few... not sure how to describe them... I guess they're just more (mentally) attractive infant toys.  Like the little dangly mirrors and shapes that infants reach for to gain strength and dexterity.  We'd like Julia to have something fun to reach for to encourage movement, but we don't think just shiny objects would be super motivating.  (Though honestly, after staring at the ceiling for 4 months, I'm sure anything would work).  But we're thinking something more mentally on her level, like the alphabet, numbers, and colors, but physically more in-line with an infant just learning to reach and grab.  I'm sure Child Life / OT probably have some good ideas... but they're just in there so infrequently.  I don't know.   We'll see how they come together.  If something works, I'll be sure to take a video. (I'm definitely open to suggestions - I've never even had a 2 year old before, let alone one who has some handicaps.  This just isn't my area so I'm trying to be creative.)

Oh!  And one of Julia's Facebook friends created an AMAZING set of laminated posters, with velcro... sticker things, that will help Julia start to be able to communicate at her level and ability!  She can point to or put the stickers on things like 'too hot', or 'wants mommy', or 'wants iPad'.  It will take some learning (for us to figure out how to use it correctly), and for  her, but we're REALLY EXCITED for her to use it to communicate for the first time!! (It's seriously perfect - even with an option for "Want to FaceTime Gabriel" (!!!) OMGosh I can already image her pointing to the 'daddy' sign.  Right now, she has SUCH limited communication.  She only had a handful of words before she got sick, and of course those have all been taken away with the trach.  So this poor little girl, ALL SHE HAS is her finger family song!  Because she knows she can show us 'daddy finger' 'mommy finger', and 'baby finger'.  In fact, the whole time she gets her treatments done (or something she doesn't like, like a diaper change), she sits there with her thumb straight in the air "calling" for daddy =( =( =( I just can't wait for her to have something more!

And I mentioned Julia was in our local news the other day - I knew they were doing an article, but I didn't know it was going to be on the cover of Sunday's paper.  They did a pretty decent job (some weird mistakes, like their definition of trach, and referring to Charlene as a nurse).  But we're really thankful for the coverage!  [Edit, I suppose a link would be nice:]

I have a few more small things, but I'll put them in tomorrow's update.  This one is already late. ... I asked Reed to send me a picture 30 minutes ago, but he "got distracted by a muffin". 

(And note for website visitors. If you use Facebook, please feel free to follow my personal account. The same updates go there, but it's just much more active as far as comments and suggestions <3 )

. . . ******************************** ********** 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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Heather V
Heather V
Mar 20, 2019

Amy, I just caught up on what’s been happening for the past couple weeks. I gave up FB for Lent and got really sick. I’ve thought of a Julia and your family daily and have been praying for her miracle. It seems there have been many little miracles and unexpected victories every day. She is fighting so hard, your little Warrior!! I continue to be amazed by your pluck and your sincerity, you put it all out there and my heart feels all of it with you. I know that your sharing of Julia’s journey is inspiring hope in so many people everywhere. I’m just so happy to read about every little bit of progress she is making, that sh…

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