April 16, 2019

She had a good day today. Vitals are all just fine, no blood pressure issues in a few days =) She only threw up once, and it was right when I got here and I think she was excited. It wasn't a lot. She's definitely plumping up. Reed's back to calling her her infant nickname of "Tubbers McStuffins" (no joke). ‍‍‍‍‍‍ ‍‍

The biggest news is her MRI is tomorrow. Ugh. I'm so anxious. It's been 2 months since they last looked at her brain... her physical abilities have improved SO MUCH since then. She's remembering things, shes saying things, shes learning things... but I'm just so nervous. I'm in a constant state of anxiety waiting for the "real information" to come out. I think I'm incapable of actually believing in her miraculous turn-around. No matter how much I say it, or want to believe it, I think I'm really just trying to convince myself that I do. ‍‍‍‍‍‍ ‍‍

I hope we get results tomorrow, but sometimes it's the next day. She has so many teams interested in what's in her head, so sometimes they all look before they tell us what the findings and plans are. ‍‍‍‍‍‍ ‍‍

Ugh. ‍‍‍‍‍‍ ‍‍

I just want it to shrink. Even a fraction of a millimeter. Just no growth. ‍‍‍‍‍‍ ‍‍

.... ‍‍‍‍‍‍ ‍‍

OK, I have to write about something else, because I will just obsess and I'll never end up posting anything. ‍‍‍‍‍‍ ‍‍

I do have a sweet moment to share. ‍‍‍‍‍‍ ‍‍

When we were told she had days to live, we didn't have a lot to do while we sat around her bed other than talk. It was about as depressing as you'd expect One thing Reed said he'd never get to see again was her nighttime 'daddy request'. When he'd bring her up to bed and lay her down, she'd scooch up on the pillow, look at Reed, pat the pillow with her hand, and say, "Dada?" in her sweet princess voice. She just wanted daddy to lay next to her until she fell asleep. And he couldn't resist! It was the sweetest little request <3 He'd often just end up going to bed whenever she did because he couldn't turn her down. ‍‍‍‍‍‍ ‍‍

It broke his heart that he'd never see her do that again. The little things like that... things you just smile at and take for granted, were taken away in a heartbeat. He knew she'd never ask for dada again. ‍‍‍‍‍‍ ‍‍

But that changed last night! ‍‍‍‍‍‍ ‍‍

Recently, she's been laying on one side of her bed so we can lay next to her, and she's been LOVING it. Last night Reed walked up to her and without missing a beat, she reached out and patted the bed, and mouthed, "Dada? Dada? Dada?" TALK ABOUT HIS HEART BURSTING! We never thought we'd see that again, and here we are. And now, in addition to patting, she emphatically points down at the bed if you don't immediately hop in with her!! This little one knows what she wants <3 ‍‍‍‍‍‍ ‍‍

And when Reed was laying next to her last night, there was quite a bit of a gap between the two of them. She really had to extend her right arm out to touch his beard. He dozed off for about 20 minutes and when he woke up, she was right next to him! This little cuddler SCOOCHED herself all the way over to him! This is the first time she's re-positioned herself at all, so that's a huge deal! She's also trying to turn herself over to face us when we lay next to her. Not quite there yet, but she's trying! If anything can get her to finally make a big physical move, it's daddy! ‍‍‍‍‍‍ ‍‍

Tonight I took a short video of her getting her bath. Many people asked to hear what her noises sound like, now that she's making vocal progress with the trach, and this is the time she's loudest. She's not in any pain, she's just protesting like a toddler <3 And then the pictures are marshmellow-towel baby, and a comparison to her picture on January - to show how much weight she's put on! She was all ribs when they finally took the halo brace/vest off. ‍‍‍‍‍‍ ‍‍

So that's it! Posting this before it gets much later. (Give the video a minute - hospital speeds)

YouTube: https://youtu.be/daNFUDnIdYk ‍‍‍‍‍‍ ‍‍

Oh, and 100 DAYS PAST "DAYS TO LIVE"!!!

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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