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December 1, 2018

Updated: Dec 2, 2018

We were finally fever-free and able to see Julia today =) She had a good day. She gets a chest xray every day for her breathingtube, and her lungs have been clearing up very nicely from the pneumonia. She's doing really well with the ventilator and is back on room air.


Her pain level was a bit elevated today, and she threw up while we were there - that was nerve-wracking to see her vomit and not be able to move her head to get it out... luckily the nurse was right there to suction. But the vomit went all down into her vest and that's not supposed to be removed at all, other than to do CPR. So they are currently discussing the best option for that... so far just lots of baby wipes, and they'll see what neurology can do about it on Monday.


They determined the vomiting and increased pain level was due to severe constipation. Poor baby still hadn't pooped and her belly was so distended they had to loosen the bottom of her vest =( She's on opioid pain meds, and you know what those can do to your system. After several attempts, another enema FINALLY got things moving and now, as Reed describes her, "she's a pooping machine". So she probably feels a LOT better!


The nurse said she's ready to come off the vent tomorrow, but they're going to give it one more day just so the best team can be there. So if everything goes as expected, she'll be off the breathing tube on Monday. She has an entire team of therapists ready to work with her as soon as she's awake, to make sure she hasn't lost any abilities or to regain if she has (swallowing is top of the list, due to the type and location of brain surgery).


She did really well in response to our visits today. She's very comfortable, but definitely aware we're there. She's making clear eye contact, and doing her best to hold our hand. She's weak, but it's already an improvement from our last visit. She has her favorite pacifiers in each hand at all times right now, and is surrounded by her growing collection of animal friends... one animal friend is WAY to big to fit in her crib (Sarah Toms and family!) And when she's tilted to the TV-side, the doctor has caught her watching TV for a few minutes in between sleeping, which they're happy with from a neurological standpoint. Reed is back to staying with her full-time until we figure out our arrangements for the duration of her halo.


Tomorrow is her 2nd birthday. We won't get any smiles or words in her current condition, but her sedation will be lessened a bit more so hopefully some more hand squeezes =)


View video of Julia opening her eyes on Facebook


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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!