>> Tuesday, June 19, 2012
That was the other shoe dropping.
I called Arkansas Children's Hospital to get an appointment with the good Dr. Frye. He doesn't have a schedule yet and they have no idea when they will have one. How's that work for ya? They took all of our information and will call when they get his schedule set up and start making appointments.
Shades of UCLA all over again. Don't call us...we'll call you. Maybe. And if you haven't heard from us in, oh let's say, 2 months, then feel free to give us a call back and we'll see where we are. At least Arkansas didn't even get our hopes up by saying THAT. They said: Talk to you whenever. Sorry. The term for my new emotional state: demoralized. Damn it.
Still, there are ways around this bureaucratic bull, and those ways are MD to MD. So, when Spencer gets back, and we get in to see him next week, we will see if he is inclined to call Frye himself and we can tailor Bug's medical plan over the phone, remotely, with no co pay. :)
So let's catch up on Bug this morning. He's at school! On the van! He made it. But not without amusement.
Monkey boy needed a quick shower. He hasn't been eating breakfast until about 11:30 so I didn't worry too much about trying to get him to eat, I medicated him and put him in the shower. He was grooving on it, and I liked seeing him smile. Then...he got a little less animated and looked like he was peeing. He wasn't. Then I heard: Plop. Well, at least he didn't soil the diaper.
Everything, and everyone, got cleaned off again and he got dressed. He walked, fairly calmly, out to the van and seemed pretty cool with going. He wasn't jumping for joy, but he was helping get into his seat, so that's a good thing. I told Shari to let them know they will probably see a seizure and he MAY start scrounging for food around 9:30 or 10:00, depending on if lowering the Dilantin a tad helps his appetite. It helped him walk. Last night, no toe walking. NO TOE WALKING. Cool. Oh, and no seizures. :)
Now, I just wait for him to come home and for Arkansas to call...or not.