In the past month I’ve missed something like 6 days due to various medical situations. First my father got incredibly sick and I actually expected I was going to be attending a funeral. Then my wife, kids, and I all got some awful stomach bug. Now we’re almost healthy, but our youngest has a cold.
So naturally, Alex’s brain surgery and OMMP situation have to go to hell next.
The brain surgery is no surprise, but now it’s real. We have a scheduled appointment for the prep work as well as the surgery itself. We knew it was likely. Alex got really sick not too long ago, and it was due to the one medication that could have prevented brain surgery. (I mentioned Alex’s Sirolimus issues in July)
This wasn’t unexpected, but somehow I was holding out hope we could find some other option. Brain surgery just sounds awful for a non-verbal child who already beats himself up too much.
On top of this, we’re having some trouble with the OMMP process. I might get into more details later, but right now I’m just hoping there have been some miscommunications or something. The short version of the story is that Alex could lose his OMMP card soon, through no fault of ours.