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That is what I'm fighting as well. I know once I start using the vent overnight, that's a permanent part of my routine, and that scares me. I will not go the trach route, though. Once I'm there, I'm done. But I feel a wheelchair is coming soon, not so much because I can't walk, because I can...

My neurologist just recommended that I get botox shots for the saliva buildup. I'm already on a feeding tube, so swallowing isn't a concern, but pneumonia certainly is! Any idea why you came down with it? Was it related to the botox injections?

I guess you're right. It was gradual and then suddenly I noticed it more. My FVC has been dropping. I'm now mid 40s (it was mid 50s 3 months ago). I'm past the BiPap; I'm using an LTV Ventilator. I never used a bipap. I guess if I can finally get comfortable with it overnight, I should have some...

I am seeing my primary care doc in a couple weeks. It's been a couple years so I'm sure he'll do lots of bloodwork. Yay. It was just so odd. I've been lethargic for months, but it wasn't preventing me from running to the pharmacy or anything. Even back in August I was taking my son to and...

How are you managing to post? Eye tracking? My biggest fear is losing the ability to communicate.

About a month and a half ago or so, my energy level just plummeted off a cliff. It's a struggle to do anything. I get really tired going up stairs. I get tired walking. I get tired feeding. I usually don't really get out of bed until noon. I manage to get a couple feedings in before that, but I...

I'm not on Medicare yet, so hopefully our standard insurance might allow it.

Has anyone gotten Liquid Hope covered by their insurance provider? I tried it out this past week and it seemed to go down easily.

Ow! That's painful! My GI yanked my initial tube out when swapping it for the mic-key valve and that hurt like a muther. Glad you got put back together quickly.

I went to see a functional medicine doctor yesterday and she basically said the same thing: Boost is junk and the other stuff has corn syrup and cows milk and that's what is not sitting right in my stomach. So, we're getting a Vitamix and going to make our own food for awhile and see if that...