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December 23, 2018

Another non-exciting day which is exactly what we want! Julia's vitals are good. She hasn't had a fever in days. Her heart rate was elevated for a while and her BP is up and down, but eventually she threw up a ton and then things settled down. So they think the formula she's getting isn't agreeing with her. They're trying out some other options, but she seemed to feel a lot better after barfing. It's sad she can't tell anyone when her belly hurts =(She can't even stop eating... it's just pumped into her. But they're going to find something that sits well.


She's VERY sleepy on her new medicine. She's awake for maybe 5 minutes at a time. Reed will get up, hold her hand, talk to her, maybe put on cartoons... and then her eyelids start to droop just a few minutes in. The doctors say she needs all this sleep - it's finally restful, and it's what she needs to heal. So everyone is a-OK with the 20+ hours of snoozing.


Her left arm is the same. It's slightly pink and warm to the touch. She can twitch it a little. They've been propping it in different positions just to try to assist with blood flow (as you can see in pic). Reed said her eye contact and other limb movement has been fine today while awake. She still can't look left with her left eye, but that's been since before the surgery so it remains the same.


And she is finally 100% breathing on her own, which is GREAT news! The vent isn't taking any breaths for her, it's just giving her a little boost of oxygen when she takes her own. No one has said anything official (and I haven't been there to clarify), but she was struggling to breathe on her own without the breathing tube because they think she was just so exhausted and her diaphragm wasn't strong enough. It looks like she's regaining her strength, and this might be a pretty good sign that the trach will be temporary.

In other news, Reed was just told it was Christmas Eve tomorrow. He had no idea. He has no concept of time anymore. He said he doesn't even know what to do with himself now that things have settled down and she's just sleeping. Which is a fine problem to have! Hopefully tomorrow is just as dull.




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!