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May 20, 2019

Julia's had a surprisingly good day today! Especially considering chemo just finished and she's exhausted. She only threw up once, which is really good for this time in her treatment, and her vitals are tending better (mostly watching heart rate right now). She's also been fully weaned off of her nerve pain medicine as of today, so that's another drug no longer entering her body! The nerve pain medicine started when the cancer got bad, for "possible" nerve pain - apparently that's common with her type of cancer/location, so they just wanted to cover that in case she was in pain, especially since she couldn't communicate and her vitals were all over the place from the tumor pressure. But they have no indication now, either from stats or physical appearance, that she's in any pain.

They also moved her up half a size on the trach. The previous one was getting close to falling out a few times, so this one is slightly larger in both diameter and length. She's also grown while in the hospital, so it's just normal that she needs a bigger one. It allows more air to pass by as well, so she appears to be more comfortable. She's gagging less and relaxing more - so all improvements.

And (I'm told) going up in size is NOT a bad direction. In fact, she took a HUGE step in the right direction today, as you can see in the picture! They disconnected her trach from the vent, and capped with with an HME (heat moisture exchange) valve . This just keeps the humidity going so it's comfortable to breathe (your mouth/nose moistens the airs as it passes through - a throat hole doesn't do that, so this HME is a substitute [the vent has a water heater that handles this when connected]). They wanted to trial this status of 100% OFF THE VENT for about 30 minutes, but she did so great they went for 45! She even livened up a bit, probably because she didn't have that big tube draped across her body! They will be doing this every day, several times a day. This is the first time she's been disconnected from this machine since her trach was put in in December. That means she was doing 100% of the work, she didn't even get the little extra air pressure support. So huge step and she did GREAT!

They also try to sit her up in bed several times a day, and the SECOND she's more up-right, she very intentionally starts to wiggle and squirm to lay back down. Obviously we need to keep at it, because recovery is going to be uncomfortable, but it's kind of adorable. She wants to be laying down with her cartoons and that's that. And her new favorite thing to do is use her feet to push against Reed. She squirms herself into funny angles so she's in position to push her feet up against him, and then she laughs and waves. It's so sweet <3 <3 And it's great for her rehab!

Pic tonight is disconnected-trach-baby! And a few from exactly one year ago enjoying her first Olive Garden breadstick. And the video is of a content, happy baby! Pretty good for just completing chemo! She's handling all the treatment, and her situation in general, really exceptionally well. We have to agree it's the alternative therapies taking the edge (or more) off the typical uncomfortable side effects.


. . . ******************************** ********** 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 o

n my Facebook page or Julia's website <3

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