In the old days, if you told me that my wife and two kids were leaving Friday night to go visit her sister for the entire weekend, I'd be pulling out my tighty-whities, Ray-Bans and button down shirt and digging around for my Bob Seger CD's.
These days? I'm not the same man. So while I might have before relished the idea of spending a weekend playing X-Box, sorting toys, watching movies where things get blown up, people curse and get naked with each other and eating nothing but pizza for every single meal, now I am feeling only sadness at the thought of being away from my family for 2 days, particularly Bennett.
Weird huh? Well, I have tons of cleaning to do, gonna try and finally come up with a solution to this floor in the kitchen. It's just a horrible tile, we should replace it eventually. We had actually talked about a deck this year finally, but until we know how much the whole Bennett thing is gonna take out of pocket for us this year we have to curb any spending like that. Might need to come up with a plan on the yard work too, we really need to beautify the outside some more, our neighbors are really making us feel like we suck.
Madden as Hell
Well holy crap on a stick. John Madden is retiring.
Sunday Night Football was my favorite to watch lately, because I loved the team-up of Al Michaels and John Madden. But I guess at 73 the guy deserves it. I will say this, I'm happy with the replacement. If I would have picked anybody to put in there with Al it would be Chris Collinsworth. One of the best color men in the NFL.
The Epilepsy Storm
And so many people don’t even really know just how much it affects people worldwide. Sad really. But for those that care, this week's Newsweek magazine has a cover story on Epilepsy. The article here...
Newsweek Cover Story: A Storm in the Brain
...is only part of the story. If you have access to a newsstand I suggest you pick it up. Amazing read. Sadly, no real mention of Infantile Spasms. That pissed me off. But what are ya gonna do? They weren't writing a book and they had to sort of narrow the field a little to generalized epilepsy, and there are HUNDREDS of types.
This statement in the article REALLY hits me where it hurts. I cringe every single time I read it.
"There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight."
A Grand Farewell
Today was the last day of Bennett's ACTH injections. The drug, a first line treatment for children with Infantile Spasms, failed, and he has been on a fast wean off of it for the past couple of weeks. I'm thrilled that he doesn't have to get any more shots. I just wish it had worked.
That's what a vial looks like. That ONE vial is $25,000 worth of medicine right there. He went through four vials. That's $100,000 dollars against his lifetime insurance maximum that we will NEVER get back. What a crime that a drug like that can be allowed by our government to be so jacked-up in price because the company making it is the only one who DOES make it is truly beyond my comprehension. But at least it's out of our lives now.
And not sticking needles in THIS little guy every day anymore?
I'll call THAT the win for this week that I said I was looking for. How's that for positive thinking?
Have a good weekend.