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June 6, 2019

Today is the 6th, so it's officially 5 MONTHS past "days to live". And she's not just hanging on, she's moving in the right direction <3 <3 Thanks to Janelle for always reminding me of this super amazing anniversary =) 

Typical 2nd day of chemo... very tired, a little fussy, really barfy.  Several real vomits today (not just mucus), but it's because of the chemo.  They've been giving her stuff to help with nausea and it's doing an OK job, but she still pukes out of a dead sleep.  She's gone through many outfits.  I brought up the stroke, and just asked if we're doing everything, treatment wise, with that in our minds along with everything else.  They said yes; even though it's easy to 'forget' the stroke is a factor - what they would do is schedule follow-up scans to watch healing progress, push all kinds of rehab/PT, and take necessary steps to ensure it doesn't happen again.  Check to all of those.  So that's good =)

I loved the dual reaction to the Donkey video yesterday.  Half were, "it's so sad", and the other half were, "but look at her wag that sassy NO finger!"  I really appreciate the community perspective =) There were a ton of good suggestions as to why she had that negative reaction: over excited, forgot who he is, scared (because let's be honest, he's kind of creepy looking), scared of not being able to do it, associated Donkey to when she was really sick with cancer / in pain, frustrated because she knows she can't, or maybe just being a toddler.  So I guess we'll just keep Donkey here and let her see him, and see if she warms up.  So far she's given very clear "no finger"s to any mention of Donkey, even if we try to trick her into saying yes.  We're going to give it some time, but I'm OK shelving Donkey if it's just not her thing anymore. 

Speaking of that 'no finger', she even waves it while sleeping if she hears anything that sounds like a nurse coming in!  They all think it's pretty adorable.  Today she SAID "dada" audibly, vocalizing right around her trach.  She did it two different times, but wouldn't do it on demand.  Progress!  And I just heard today that yesterday during floor PT, she supported herself sitting up (butt on floor with legs forward), ALL BY HERSELF, several times, for 5-15 seconds each!  It's almost like she didn't realize she was doing it and just went with it.  So that's also great progress! And today she was hiding her face behind one of her stuffed animals and just peeking half an eyeball here and there.  I was playing peek-a-boo at different angles and making silly faces.  I can confirm she can see out of both eyes, at a decent distance, in some capacity.  Even her right eye, which is her bad eye, appeared to see me and made her laugh at the appropriate times.  No 'official' word from the ophthalmologist in a while... but I think the evidence is pretty solid. And for the picture tonight -- America's National Miss selected Julia to be a "Little Ambassador".  Their pageant is this weekend and I finally got Julia into her little sash and crown <3 She got into a new beautiful dress sent by a Facebook friend, and we even managed to paint her nails while she had her 10th grump nap of the day ...getting ready for the camera is a lot faster with no hair to fuss with!  So she had grump naps, then a grump bath, and then got LOTS of daddy snugs (video in comments), and then got dressed up for her pictures and had a good time playing with daddy and her crown <3 




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

Chordoma Foundation:

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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