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January 3, 2019

Well, I really only have one piece of news today, and you can see it in the picture! Finally that big bulky halo is off her pretty little head!!


They were happy with her healing process so it came off today =) She had it for just over 6 weeks. 4-6 was initially said, but then it was 3 months once they realized how far down they'd need to fuse. She'll be in that neck brace for several days, just as a transition between halo and no halo. She'll be doing PT focused on her neck stability, and the brace can come off once she's cleared by the surgeons. I am ... anxious about seeing how much mobility she has. We were told to expect "very little", and that will be permanent. So no up/down/left/right. She will be pretty much stuck forward. I hope that doesn't scare her too much as she's recovering.


They did do the interior shunt today as well. Right now she's in another CT scan just to check on the progress of that procedure - they want to make sure it's draining and seated correctly 6 hours later. (Edit to add: she has a new incision in the back of her head for the shunt, but only the one to recover from - no abdominal incision to go along with it or anything.)


She had PT before the operation. It went as expected - she's very tired. It's difficult for anyone to get a gauge on where she actually stands (capability wise) just because she's being kept pretty "comfortable". So it's hard to tell what's actually weak, and what's just ... she wants to sleep. So hopefully we'll get a better idea of her actual situation in a week or so.


And the sedation from today is still wearing off, so no interaction since the procedure; and of course she's all puffy again from the fluids. Their goal now is to get her completely off sedation, but that will be a 1-2 week process to manage withdrawal. Although, right out of surgery again, she popped that left eye all the way open when daddy leaned in to kiss her checks. No amount of medication can hold her back from Reed!


Soooo happy her halo is off! We're able to kiss all over her pretty face now, no matter how much she grumps =)




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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!