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December 11, 2018

Updated: Dec 22, 2018

Julia has spent most of the day sleeping - the new medicine really knocks her out. The physical therapists do still stop in, but there is limited they can do with her being so tired. These medications will all finally get weened off once she's past the trach surgery. The procedure is officially scheduled for tomorrow at noon. After which she will be kept heavily sedated for several days for observation. Chemo will continue during that time. While she's sedated, they will figure out the best way to change the lining of her fancy vest (which she has now puked AND pooped on... so it's needed!) Her fever continues to fluctuate, though in the 99s/100s today, so not bad.

When she's awake, she's getting more and more exploratory with her hands. She's been pulling off her leads and trying to undo her vest buckles. She can get the leads off, but there's no way she can do the vest. Reed said he can't even figure it out. So she mostly just fiddles with it. She's making it even more well known when she wants her daddy. She waves her hand all around and then sticks her thumb out ("daddy finger"). I wish should could just talk... but it IS adorable.

Reed is doing really well down there. He has a ... unique personality, as those who know him know; and it is like he was designed to be able to live in a hospital room with unlimited patience and zero anxiety. Thankfully his work has been extremely understanding, and they are currently allowing him to work remotely while we get through the halo phase. I ask Reed regularly if he's OK there, and if he needs a break... he says a break never crosses his mind and there is nowhere else he'd rather be. His only complaint is that it's cold at night. They are keeping the room pretty chilly for her fever and the couch is situated directly under the vent. It's pretty cold! I bought him a really warm fleece blanket, which he says works well but it's the size of a throw, so it's not quite long enough to cover both shoulders and feet. So I ordered a much larger one that will get delivered tomorrow. He doesn't complain about the hospital food, but he's VERY happily eaten everything provided by friends. He does miss his little guy, but Gabriel keeps catching colds so we just can't risk bringing him down right now.

We continue to be the recipients of so much generosity, from gift cards, to food drop offs, to donations. Thank you guys for thinking about Julia every day. I hope that some day soon we can share a nice happy video of her playing like a 2 year old should.

The only other bit of news is today would have been my dads 65th birthday. My brother and I celebrated by going out to dinner, since we always took dad out to dinner and a movie for his birthday. It was really nice.

I'll update again tomorrow after hopefully an uneventful surgery.

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