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May 22, 2019

Julia's been a bit of a grump today.  Vitals are fine, and no barfing which is great!  But grumpy.  She slept most of the day and just wasn't super interested in a lot.  Vitals are great.  And they stepped down on another med (I forget which).  They are really trying to get everything unnecessary out of her system before she comes home.  No update on that timing yet.  We expect the next MRI after her next round of chemo.

Today was the CHOP Prom.  Reed got the invite a week or so ago.  They apparently have it all setup so both the parent and child can go dress/suit 'shopping' and then go to the dance together <3 Of course Julia can't go with her compromised immune system, so we didn't think much of it.  But today Child Life remembered that she's up in her room, and went dress shopping for her! They picked out an adorable blue dress and got her all done up in it and a pretty belt.  So for her special prom, she got disconnected from her vent and spent TWO HOURS in a row cuddling with Reed not hooked up to anything <3 <3  She did so well with being off that they let her go an extra hour =) She didn't want to do anything other than cuddle, so that's all they did!

That's one of the best parts about being able to switch to the HME instead of the vent - nothing is keeping her in the bed!  Other than her physical ability of course, but she can like... sit on the couch with us, or easily go in her stroller, or get spun in circles.  This allows her to be so easily mobile!  So the plan is to just continue to increase the time she's on the HME/doing all the breathing work on her own, and then she will graduate to the next steps of eventually removing the trach. 

To answer a question from last night - with the HME (which just humidifies the air) she is still breathing in and out through the trach.  A next step might be a special valve that allows her to breathe IN through the trach, but then it would force her to breathe OUT through her mouth.  And a final stage would be to fully cap the trach, where it blocks the opening completely so she breathes in and out fully through her mouth.  Once she's doing that all the time (absolutely no vent support / or need for hole in the throat), they would look into removing the trach! Ways away yet, but we're definitely headed there.  So far she's doing amazing with all the steps, despite being weak from chemo =)  And all opinions are 100% that this trach is temporary (it's just a long process to get it out once she's dependent on it).

So that's it!  Some 'prom' pictures tonight.  And no new video, since she just slept and cuddled with Reed (and now she's Ms. Grumpy), so I grabbed one from last summer.  Just a short moment of her being a typical big sister <3 This was July, and her neck behaves totally fine here.  We really noticed the stiffness (that we took her to the ER for) in October, but in hindsight, we could see it in videos a bit in Aug/Sept.  So while we have no way of knowing the status of the tumor at this point, my best guess is it was just starting to grow.  But... normal big sister and her little tubby brother!


. . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: Children's Book: 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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