Appt went … ok. He lost weight. They are starting to become alarmed. His BMI is 0. Going to give him a little bit longer to do it on his own – and then it’ll be the tube. I know it’s not the end of the world, but I imagine it’s a helluva lot easier without one. And with everything else coming this kiddos way, I just want to protect him from as much invasive bullshit as much as I can.
He has literally no hand strength at all. It registered 0. Last time I believe it was 5 & 8.
He has a lot of negatives when talking about his range of motion as measured by the PT gals.
He is being delivered a cough assist machine sometime next week. They agree that it’s time for one. And basically yeah, it blows air in, then sucks the same amount of air back out. Along with any other goodies down there. They said it will become our best friend. They frightened me with that.
I get the sense that this is it. That this is the Beginning of the Trying Times. The hard times. The times that see what I’m worth. What we’re worth. See if we have what it takes. I fear we won’t be prepared when it goes above and beyond breathing assistants and night splints.
There’s a door that leads to those Trying Times, and there is no part of me that wants to open it. So I haven’t. I have no clue what’s next. I’ve no clue on how I’m going to handle it – or not. I’ve no clue because my mind won’t give me one. Safety sake. To leave this honeymoon phase and head into the bullshit causes my heart to race a little bit. To race a lot.
I’m trying to only bite off what I can chew at the time. It’s hard not borrowing trouble though.
I have so much to do. I’m not doing so hot on taking the pills again. Not sure why. Just a dumbass.
Not sure why I can’t post either. Ongoing forever stupid bullshit.