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November 18, 2018

Not much to report. Julia's vitals are stable, so the doctors haven't changed anything. Her swelling is the same, which is expected; they said the severe swelling could last for several more days. Based on her blood work, they expect she will need another transfusion either tonight or tomorrow during her followup surgery. She's scheduled to go in first thing in the morning. The fusion surgery is normally a 3-4 hour surgery, but they said it could take 5-6 just because it's just not a very common surgery on a toddler.

She will have significant reduction in range of motion, all directions, for the rest of her life (which hopefully is a long time, making all of this very much worth it). But they said because she is so young, she will grow up knowing nothing besides this small handicap and she will adjust just fine. Her ligaments will also be able to stretch unlike that of an older person, allowing her a bit more range of motion when rotating from the upper back.

She will definitely be kept totally under for another few days - they won't wake her up until it's 100% safe to do so. I believe swelling is the first hurdle.

Tuesday we have our oncology meeting. And Wednesday she is tentatively scheduled to wake up. I'm not even sure what to expect from that... she's at the delicate age where no one can explain to her that the bodysuit and halo (literally attached to her head) is NOT what is causing her pain. It's honestly too overwhelming to even think about her reaction, so I'm just not.

I'll update again tomorrow as soon as we have news about the fusion surgery. It's also Reed's birthday tomorrow... just info for the sake of info.

I'm not going to post a picture of her today, just because of the swelling. Instead I will share this beautiful bracelet Angela Luminello sent me. It's a perfect fit right beside my hospital band 📷<3 What an awesome surprise in the mail!

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