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August 20, 2019

Rough morning for Julia, but fine rest of the day.  She woke up desatting (oxygen saturation level dropping).  It wasn't an emergency (80s), but low enough to keep setting off her alarms - they like to see her above 95%.  It's these stupid secretions.  They are just so thick.  So she got a saline treatment, which made her gag, then she had like, the most massive barf ever (all snot) and it went over everything.  So she needed fresh strings, a bath, and a whole bed change first thing in the morning.  I'm HOPING the thickened secretions are because we skipped the new(ish) nasal spray last night - we weren't sure it was doing anything (and she hates it), so we thought we'd skip and see what happens.  I HOPE it's just due to that, which they started back up today.  But the original problem, which prompted the nasal spray, was that her secretions were too thin... not too thick.  So, we'll see.  Her quality of life would go way up if we could get these under control.

And actually, today she started blowing her nose to get them out.  She doesn't hold a tissue up to her face or anything, she just blows really hard and a big snot ball comes out and then she wipes it across her face > . < I guess anything to get them out at this point... 

PT visited but it went... poorly.  She yelled, and kicked, and swatted.  Their goal was to get her to hit a ball, which I think she did... by accident... because she was angry.  So, not sure if that's a success or not?  It lasted 10 minutes.  Audiology also stopped by to check her hearing.  You can guess how well she cooperated!  So... we still don't know if she has a hearing problem, but they did see a huge build up of wax, which some people suggested last night.  So they're going to come up with a game plan to get that cleared up.  

But after all that excitement, she's been a content cuddle bug and is now channel surfing on her iPad =) 


We have our meeting with the team tomorrow.  I'm really nervous.  And I'm pretty sure it's what's had me in a pretty bad mood this week.  Well, not bad.  Emotional.  I'm all over the place, and I've been steady for months.  Like... we have no new imaging.  It's not like they snuck her down for an MRI and we're going to get really bad news tomorrow - there is no new information! So I don't know why I feel like I'm walking into a death council.  I asked on the phone if I'm going to be ambushed with bad news tomorrow... she sounded very confused.  

She said the plan is to simply discuss "what's next".  I guess the doom-and-gloom comes from...what if "what's next" is no options.  But they're going to discuss what things look like after chemo, what gets her home, what the next 6 months might look like, what options are depending on what the next MRI shows, etc.  (The next MRI should happen before the next round of chemo - so this week or next.)  So.  I'm super nervous, and I probably shouldn't be... but that's how I roll. 

On a lighter note, at least 10 people "stopped in" to "remind Reed" that he has a 3:00 appointment tomorrow.  It's driving him insane - he hates visitors.  He said he's going to put an "I know the meeting is tomorrow" sign on the door so people leave him alone! LOL


Oh!  And look what was spotted out in the wild!  A Julia car ribbon!  I don't know whose car this is, but it's pretty cool <3 <3 Julia's Facebook friend and her daughter spotted it in PA.  I believe that fundraiser is still going if you'd like one - link in footer.  And video in comments: Julia being SO excited for the trach baby doll yesterday, and then a clip of her baby brother learning boyish ways from his cousin <3


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

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

Julia's official 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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