An Update as o6/13/13f

After two months of too much seizure activity, it was a relief to land here at the Mayo Clinic last week and to have four good days with no seizures at all. It was as if even the air here contained a special healing magic. But then on Friday, Bob had one small seizure. This was followed by four on Saturday, five on Sunday, and six on Monday. Clearly things have not been going in the direction we had hoped. But at least we are here in the company of world experts who can be involved in puzzling through this mystery. On Monday, Bob was hooked up to a continuous EEG to gather data about the electrical activity in his brain.

This was to have been a two-day test, but on Monday evening he had a particularly long-lasting seizure. This episode was exasperated by a fire alarm in our hotel, with all of the noise of the alarms, flashing lights and sirens (it turned out to have been a fire in the elevator engine room). We were all evacuated and Bob and I kept walking away from the noise and took refuge in a small park in a nearby residential area. There were two young boys playing on the playground who kept looking over at Bob, with his head all wrapped up with gauze. So he went to chat with them to allay any fears they might have. He asked them what they were playing and they said they were playing Zombies. He asked what Zombies were and they confessed “We think that YOU are a Zombie!”  Bob assured them that if he WAS a Zombie, he was a friendly Zombie and that they didn’t need to be afraid. We got  chuckle out of that.

All of that noise and excitement was not good for Bob’s inflamed brain and we ended up going to the ER Monday night. The next day he was hospitalized to receive some strong steroid treatments and to continue the monitoring. Three days in, things have still not settled down to the extent that we’d like, so it may be time to consider even more aggressive treatments.

We’ll keep you posted. As always, we are so grateful for your continued love, prayers, and concern.