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June 2, 2019

Ugh, rough day today for Julia.  She has been pretty inconsolable for the last 2 hours.  She's crying and swatting and scratching... I'm sure part of it's because she's a very tired two year old... but her medical situation makes it so much more difficult.  She has no fever and we checked everything to make sure nothing is pulling, or red, or tangled.  But they gave her extra Tylenol and Ativan just in case... so waiting for that to set in.

She's clearly trying to tell us something but she can't communicate.  We try to ask her questions, but she gives mixed answers because she obviously doesn't understand.  We brought out all her picture boards to see if she'd point to something, but she just gets upset and swats the board away.   She just keeps waving her finger 'no' and crying.  

In fact, she just started waving her finger 'no' today, and she's doing it very enthusiastically.  I mean... we still need to do the things she doesn't want us to do... but I feel bad that she's learning new ways to communicate and we're effectively ignoring her.  I wish we could NOT do something when she asks us not to, to show her she's doing a good job.  So so far I'm just telling her I see that she's saying no, but I'm sorry I need to do it anyway =(

So we just did bath and string change and it went horribly.  Like... so bad I never want to do it again.  The nurse practitioner actually came in during it saying she's been watching Julia's heart rate on the monitors (at 200+) and wanted to make sure everything is OK.  She was over-the-top worked up.

She was OK when I first got here.  We only had about 10 minutes of smiles.... So the happy Julia picture is certainly misleading.  Video (in comments) tonight is of Reed trying to console her during strings changes, while I took a break to compose myself.  Ugh.

Now it's all over and her heart rate is down to 170.  She's smiling and hugging Reed now.  Rubbing her eyes and yawning.  She needs to go to sleep for like, a day.

I had other things to post tonight but I'm over the day.



. ******************************** ********** 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 on my Facebook page or Julia's website <3

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