Connor had his neurology appointment today in Seattle, so we spent the first half of the day there. We were interested to hear what Connor's neurologist had to say about his new diagnosis of anhidrosis; apparently one of his seizure medications can cause the condition as a side effect. However, the medication has also seemed to help Connor quite a bit; while on it we haven't seen a single seizure where he stops breathing completely. We're also not sure at all that the medication is what's causing the anhidrosis, as Jer and I haven't ever seen Connor sweat and he's only been on the Zonegran a few months. So it's difficult to know whether or not we should change the little guy's medication regime or not.
Connor's neurologist is going to consult with the head epileptologist and determine what the best game plan is going to be. It might be that we don't change anything, it might be that we try a different medication or that we revisit the possibility of the ketogenic diet. There's not a clear path here as to what the best treatment is going to be, so I'm sure they'll weigh the options very carefully.
After we left the neurologist's office we headed down the street to the giant Barnes and Noble where Connor usually gets his Reward Book. Connor always gets a book after each appointment where he does well (which is all of them, because he's a fantastically well-behaved kid) as part of our Make Sure Our Kid Who Sees Eight Bajillion Specialists Isn't Afraid of The Hospital campaign. We pulled up in the side parking lot of the bookstore, I got Connor out of the car, wheeled him around to the front of the building and stopped dead at the giant sign sitting out in front of the store. "Barnes and Noble Has Closed," it read. "To Purchase Books, Please Visit http://www.barnesandnoble.com." Apparently the bookstore didn't renew its lease.
Connor was not a happy camper, and it wasn't just because of the words his mommy was muttering under her breath. My child is a creature of habit. One of the reasons he does so well at hospital appointments is that we keep the routine the same every single time, and we go over the routine repeatedly before we leave and during the course of the day so that he knows exactly what to expect.
The routine goes:
1) Drive Into Town
2) Check In And Sit In Waiting Room
3) Go To Appointment And See Doctor
4) Get Labs Pulled
6) Leave Hospital And Drive To Bookstore
5) Buy Reward Book
6) Eat Lunch
7) Pick Up Salted Caramels For Daddy (there's a fantastic chocolate shop in the complex as well)
8) Drive Home
There was absolutely no room in this routine for "Stand In Front Of Closed Bookstore And Stare At Sign For Five Minutes While Trying To Figure Out Where Nearest Alternative Bookstore Is As Connor Gets Progressively More Upset." We weren't going to be visiting the bookstore's website; somehow I was pretty sure that showing him an online picture of The Reward Book We Can Buy Online wasn't really going to cut it.
And then Connor proceeded to lose his little mind while I tried to get us back on the rest of the routine as quickly as possible. We ate lunch, or at least I ate lunch as fast as I could and Connor yelled his head off, we stopped in the chocolate store where I bought chocolate and Connor angrily signed "No Don't Like Bad Want Go Bye Bye," and then we got back in the car and drove half an hour down the road to an almost identical Barnes and Noble, where Connor instantly reverted to his usual angelic self.
So we'll be rewriting our hospital visit routine to put the bookstore visit after lunch rather than before lunch, and hopefully if I rehearse it with him enough times we'll avoid a repeat performance of the giant meltdown he had today. That is if they'll quit shutting down my bookstores.
I like getting a Reward Book too.
13 minutes ago