In Which Connor Goes To The Neurologist

Connor and I drove up to Seattle today for his quarterly neurologist appointment.  It was actually a great appointment, and I don't say that often about neurology appointments.  That's because usually we go up and tell the neurologist that Connor's seizures have been getting worse.

But for the first time in a long, long time, we could give him a good report!

Since we found out that Connor has anhidrosis (a.k.a. he doesn't sweat) and have started taking precautions to make sure that he doesn't overheat, we've seen a dramatic downturn in the number and severity of his seizures.  Now other than periods in which he's sick and running a fever-- in which case we've just learned to expect tons of seizures-- he's averaging one about every three weeks, which is better than we've seen in well over a year!  As a consequence, not only is Connor feeling much better, but he's been communicating much more and regaining skills we haven't seen in a long time. 

Also the progression of the neurological damage Connor's seizures inflict on his body, like the tremors, has slowed way, way down.  Of course the damage already done probably won't reverse, so the clonus and hyperactive reflexes he already has are probably here to stay.  But he's still young and the human brain is remarkably resilient, so if we can keep his seizures down to this sort of manageable level and do our best to keep him from getting sick, there's no telling what kind of strides he could make in the next few years!

After Connor's appointment we headed straight over to the lab, where Connor got his blood drawn to check his medication levels and also to see what the protein and creatinine levels-- indicators of his kidney function-- are looking like.   

Luckily the blood draw didn't take long and was pretty much painless for Connor, since we were lucky enough to come in when Hector The Wonder Phlebotomist was working.  I swear that man is magic-- Connor doesn't even flinch when he puts the needle in, and he gets it right dang near the first time every try.  We should find the creatinine and protein level results out some time in the next couple of weeks; keep your fingers crossed that those levels will have gone down, which would be an indicator that his kidney is doing its job and isn't in trouble.

So after that we walked around the shopping center down the street from the hospital, picked up a reward book at the in-resident toy store, grabbed a bite to eat, stopped in the chocolate shop for some goodies and then headed home. 

We'll see the neurologist again in September, unless we have something important come up before then.  I hope that appointment goes as well as this one did!

~Jess