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June 27, 2019

Day 3 (of 5) of chemo, and she's pretty knocked out.  Vitals are all really good for this stage (only heart rate is high, but expected).  She's spent the day 80% sleeping and 20% being awake and really happy.  She was so tired she pretty much slept through her bath and string change.  She's likely tired from chemo, but also from her HUGE day yesterday with Gabriel, and her 4am dance party.

Her new favorite thing to do is play with this shape basket - where you fit shapes into their shape hole.  She's not good at that part, but she loves stuffing little Peppa's into the basket and then opening it to find them.  It's clear she's trying to incorporate her left arm; no real purposeful movement out of it yet (except when she's smacking our hands away), but you can tell it kind of mimics her right when she's trying to play with something.

The continuity nurse (nurse in charge of making sure we're properly trained), called to let me know that it was reported to her that yesterdays trach change went "really well", and that they wanted to be sure to recreate that environment for next time.  ... my first one was noted down as "not great / high anxiety" LOL.  So... they saw improvement too!

And it's crazy what small, totally normal, mundane thing can be such a big deal in a situation like this.  Between Julia's (super) fragile neck, and the subluxation concern following the stroke, and her trach, and all her attachments, and the very visible pain she was in when moved, (and my bad back)... I just haven't been moving her.  I lay next to her and cuddle, but I wouldn't lift her weight off the bed in any fashion.  If she slouched down, Reed or a nurse was always right there to re-position her.  I even had a hard time watching because I hate seeing her in pain, and boy, as she came out of coma the pain at being moved was very evident.  Well, today she was slouched down and did her little back arch thing, and I asked if she wanted to sit up.  She nodded yes, so I just instinctively grabbed her under the arms and re-adjusted her!  It just happened.  I wasn't afraid of hurting her, or pulling out her trach, or snagging her wires, or injuring her arm.  She didn't grimace at all.  She just smiled and went right back to watching cartoons.  For so long she's been so fragile and close to death, I had just accepted that I wasn't qualified to handle her, out of fear I'd hurt her (or kill her, no joke - I have quite the imagination)..  So like, that was really great!  I can now adjust my daughter to make sure she's more comfortable <3 And it doesn't cause her pain!  Yay!

Lots of requests for Julia's business cards!  Particularly by ladies named Linda and Melissa <3 And just because the addresses are going into Excel, and data is available, I thought you'd like to know that Julia's cards are being requested most by PA (makes sense), and then Texas, North Carolina, Illinois, and Mississippi =) And they'll be going as far away as Australia.  --If you missed the post a few days ago - these are just tent-folded business cards designed to spread her story of hope to others fighting this.  So it has a few pix, quick summary, and ways to follow/contact me with questions.  If you'd like a handful of cards (or more) just message me your address and I'll send some out.  (They're free, if that wasn't clear <3) And it looks like someone donated to my GFM (thank you!) to cover postage, so please don't worry about that!  It's just my time which I'm OK giving.  .... and Alicia and Laura's time because they get recruited into everything <3 I plan to send a bunch out Monday, so feel free to still message if you'd like some. (As of now we still haven't gotten through all the messages, but we're responding when we read it, so the people who messaged me first will be last to get a response! But we'll definitely see it)

Picture and video (in comments) are of the sleepiest refusing-to-sleep baby ever.


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. ******** ~~ Julia Adams ~~  ********    ********** 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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