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September 14, 2019

Late update tonight. Julia had another good day =) Reed got back down around lunch time. There were lots of kisses, then she pulled his hand in up under her chin and convinced him to cuddle next to her. They both took a long nap <3 No changes medically. Tomorrow at rounds they are going to discuss what the options are should the secretions be allergy related. I don't believe they think they are (I know they've already done many tests), but they're going to discuss additional tests and medications. I think everyone agrees the typical secretion meds, even in increasing dosages, just aren't doing anything. I've also mentioned my desire for a more appropriate chair several times, so hopefully by the next time I'm down there (Monday), something is in motion. She only had a small barf once today, and it was after a ton of coughing - so she likely just got all worked up and started gagging. It's all this mucus. Oh, and she's started pointing to her diaper when it's wet. Then we'll ask "do you need a diaper?" And she will nod yes! She still fights during the actual diaper change, but this is great progress in communication. She has also started pointing to her tears <3 =( If something actually makes her cry (like when we mention trach change), she will start crying and point to her tears over and over. I mean... we HAVE to keep doing the thing, but OMG heart strings!! The best I know to do is acknowledge I see she's crying, and that I know she doesn't like it... but that we have to do it to make her better, and we will be as quick and gentle as possible. Open to suggestions. It makes me feel awful to see her put more effort into making sure we see she's upset =( But during her bath tonight, which she usually hates, she just kept requesting kisses from Reed and it went surprisingly well! She's now happily watching cartoons while holding his hand. Video in comments: Julia right after her bath (look at that left arm!), and Gabriel laughing at himself in his video from last night =)

. ********** ~~ 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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