Life after surgery

It's been almost three weeks since we've been home and Josh is recovering pretty well. He had follow-up appointments in NYC with his neurosurgeon and neurologist this week. His neurosurgeon said Josh is a model patient and has recovered extremely well. He needs to take an MRI in a month or so, but is otherwise clear to resume normal activities.

His neurologist recommended a number of new meds, but wants to hold off until Josh starts having seizures again. Oh, did I mention that Josh hasn't had a seizure in 24 days? We believe it's the lingering effects of the surgery and the steroid he was taking after the final surgery.

Those of you who followed Josh's last surgery in 2009 know we were hoping for "The Miracle Scenario" last time around -- the possibility that the placement of the electrodes on his brain actually had a curative, rather than diagnostic, impact on his seizures. This time around, we are not getting our hopes up because Josh actually resumed having seizures three weeks after the 2009 surgery.

We are starting to think about the next step(s) for Josh. There are a couple of meds, including one that is not approved in the U.S. called Frisium. We will also be looking into transcranial magnetic stimulation, deep brain stimulation, Neuropace, and alternative/natural treatments.

That's the medical update. The surgery, needless to say, took a tremendous emotional toll on Josh and us. We are finding that part even more difficult to deal with than the medical issues.