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July 10, 2019

Good day, happy baby.  I forgot to mention yesterday that she went back to her full 6 hour HME sprint like a boss.  And again today.  She did really great both times.

We had our GJ tube training today.  That's her feeding tube.  The original one went directly into her stomach (there's a port thing on the outside - you can see it in some pix).  But she was throwing up a ton so they did a procedure to push the tubing ~15 inches further down into her tract so it's in her intestines.  Now we can put stuff directly into her stomach, or we can bypass that completely so she doesn't barf it up. Her food and most of her meds just go into her intestines now.  So we had the class to learn to care for that, clean in, hook it up, troubleshoot, etc.  It was no big deal.  It's nowhere near as gory or nerve wracking as the trach.  

I'm not usually at the hospital during the weekday-days when all the extra staff is in, but I was there today so I talked to a few people.  Honestly, I'm not super encouraged with how it went.  I'm actually a little annoyed.  Not at them; just life.  Nothing BAD was said, but... I was just really hoping for some reassurance... in any area.  And I just didn't get it.  I know no doctor can guarantee anything, and perhaps we're just really in uncharted territory with Julia, but everyone just seems so hesitant to make positive statements.  Speech doesn't know if she'll ever swallow again, or learn to have meaningful verbal communication.  They can't say if she'll ever get this trach out.  Apparently she likely has lung disease from 'everything that's gone on', and so she'll need to just grow to form new, healthy tissue (that doesn't sound like something that happens like, next month.  That sounds like 'years' to me.)  And if she can't control her secretions (which she might never do if she doesn't start swallowing), then she might never have a stable enough airway to take the trach out.  And 'who knows' if she'll be able to walk again.  I was reminded that we're still treating bad cancer that very likely damaged her brain stem, and of course the stroke.  Though he did say he'll talk to PT about a walker of some sort.

I just want one of her doctors to look at her and say, "Yes, almost definitely" to one of my questions.  I want her odds to be like learning to walk after a broken ankle.  Something that takes time and effort, but like, 99% chance that things go your way.  I don't like that everything is stacked against her.  I don't want it to be a 50/50 shot.  Despite doctors being wrong about my first pregnancy not being an ectopic, and my second pregnancy not being a miscarriage, and my dad being able to beat his cancer, and Julia not HAVING cancer, and then Julia NOT beating her cancer... I still value the opinions of doctors so much.  It's such a sigh of relief and a feeling of hope and encouragement any time I hear one of them say something positive.  And I'm just not getting it.  They're not NOT optimistic.  It's just a lot of shrugging and saying "time will tell".  (Have I mentioned I'm extremely impatient and have control issues?)

So... super frustrated.  I still think all her doctors, nurses, and therapists are fantastic... I just want one of them to say everything is going to be fine.  That in a year from now, she will be a normal girl, with long, pretty hair, living a normal 3-year old life... just with some extra scars.  

But, that level of optimism doesn't seem to be in the cards for Julia.

Though the doctor did say our oncologist stopped by earlier and watched Julia move her left arm all around like crazy and was super happy with that!  I also watched her swat at the nurse... the fine motor control isn't there yet, but she can aim pretty well at a big target =) And it was draped over her eyes again today, so that's 2x this week she's purposefully moved her left arm somewhere other than the bed and her chest =)  Definite improvement.

And I realize she's beat odds left and right, so like... what's a little bit of walking compared to fighting her way off her death bed.  I just wish something was destined to come easy for her.


Anyway.  Reed came home before lunch to drop his car off, so we took Gabriel out to pick some raspberries and then went to yummy breakfast before heading down.  Gabriel loves spending time with Reed so much <3 And then both babies played with the giant unicorn balloon and watched some cartoons.  By the time I left the hospital, Julia was fighting sleep just like a normal toddler.   But she had a nice short visit with Gabriel today. Lots of smiles and hugs <3 The hour-long play date was skipped this week due to the class, but they have it on the schedule for Wednesdays going forward; and we'll try to do our own in-room play date on the weekends.

And an update on yesterday's post: I saw the requests for my cookie recipe, and I will definitely share it this week <3 And I was able to forward the family with the in-utero brain tumor concern lots of information and possible surgeon contacts! Thank you <3 ...What has my life come to that those two sentences are in the same paragraph.


Video in comments is of a totally random moment from when we got there today... I planned on filming something a bit more exciting, but that never happened!  So I added a cute clip from last July <3 


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. ********** ~~ Julia Adams ~~  ***********    ************* Official Links ************* *************************************

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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