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April 10, 2019

I'm typing this as Julia is busy dancing (wiggling) to a Peppa Pig song. ‍‍‍‍‍‍ ‍‍

Julia had a session of PT today. She was OK at first while daddy was out of the room, but as soon as he came back in, it was, "dada dada dada" and she wasn't super cooperative. They tried to get her to read a book but she was having none of it. But they DID manage to get her completely sat up in bed (off the back support)! The last time she did that movement was during PT while she was still wearing her halo!! So like, December. She wasn't a huge fan of sitting up - I'm sure it used muscles that haven't been used in 5 months. ‍‍‍‍‍‍ ‍‍

Speaking of months - I just realized I completely missed April 6th, which was THREE MONTHS past "days to live". They gave her that sentence on January 6th. It's April 10th and she's wiggling her little butt off to Peppa. ‍‍‍‍‍‍ ‍‍

OK, continuing! ‍‍‍‍‍‍ ‍‍

So she had a great (productive) PT session today - just not her personal favorite. Oh! While she was sitting up, she got a FULL BODY DADDY HUG!! She even managed to lift her right arm up over Reed's shoulder for a squeeze =) Literally best thing ever for Reed. Sitting up was tough for her, but she did a great job for the first time in forever. ‍‍‍‍‍‍ ‍‍

And then she went to sleep for like, 6 hours. That's all the energy she had. ‍‍‍‍‍‍ ‍‍

And she had a great FaceTime with Aunt Charlene and Gabriel. I need to record her and Gabriel interacting over FaceTime... it's the sweetest thing. They both show us what all kinds of animals say, and where their noses are, and they wave and blow kisses to each other. And when Gabriel walks away from the phone Julia does the "Where'd he go?" arms. It's just precious. ‍‍‍‍‍‍ ‍‍

Vitals have been just fine today, no concerns. She has a new shirt on, and is under a new SUPER COMFY blanket, and has some of her safari animals tucked in with her. (She LOVES being tucked in right up to her chin. She snuggles in and watches hours of Peppa... and apparently Bubble Guppies? Reed seems to know all about them. She gave a few wiggles for Bubble Guppies while snugged in under her blanket.) ‍‍‍‍‍‍ ‍‍

And I want to think everyone who has sent things to her these past few weeks. It has been WONDERFUL seeing all the Peppa stuff show up at my work <3 She has a Peppa blanket, a dozen Peppa books, Peppa stuffed animals, Peppa toys, a Peppa sticker book, Peppa socks... Every one of them has made her SMILE! And we have some new books to add to the collection (she goes through a dozen a day, easily), and a few other things. THANK YOU for constantly thinking about her. And thank you for thinking about me and Reed. I bring him down home cooked meals several times a week, and we just received another Wawa gas card. I have not paid for gas a single time since Julia was admitted. That was 5 months ago. 100% of my back and forth gas expense has been covered by friends (old and new). Thank you so much for that... what a weight off my shoulders every time I'm able to fill up the tank with a gift card. They are getting used and SO appreciated. I wish I had time to write back to everyone personally. <3 <3 ‍‍‍‍‍‍ ‍‍

So, other than an unexpected trach change due to a ton of secretions, she's had a really good day. (Actually she just threw up for the first time today, but the nurses had come in and mentioned trach care and we think she got worked up - possibly from her negative experience earlier. So other than right now, she's had a good day.) ‍‍‍‍‍‍ ‍‍

I'll add a video of her playing with Peppa today.


. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************

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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