This one's from me with some good news!

Hi, this is Amanda. Tony has allowed my to post to his blog. I'll try and fill in the details of the last couple of days at the Cleveland Clinic, but may not be quite as entertaining as Tony is when he writes.

He has finally had some seizures and apparently has given the doctors some good data to review.

Let's back up a little ... They allowed him access to the Ictal Spect Test Tuesday through Friday. Each night he was sleep deprived and fell asleep at almost exactly 8am the next morning. A nurse waited as his bedside ready to inject him with the radioactive medicine as soon as he had a seizure. Then we waited and nothing happened, no seizures, so no test. Strange that a shortage of the medicine for this test was the reason his original appt here was moved from July to Aug 31st. Now, there will be not an Ictal Spect test, at least in this phase.
Friday night Tony slept and Saturday we just hung out together. Since he had been off meds for several days, I think he felt less foggy. I have enjoyed being with him just wish it could be under different circumstances.
Saturday night Tony felt like he wanted to stay up and see what happened, I fell asleep on my lovely pull-out chair. At about 5:30 this morning, I woke up to three nurses in the room and Tony having a seizure. It was rough on him, the worst I have ever seen. He said he hadn't had one like that since Junior High. It is obvious that this type of seizure is almost normal for the nurses here and they have taken very good care of him. He had another bad one about 9:30. The nurses decided to give him something to help calm him down and then he was give a half dose of his usual meds. He had a third seizure later on. This one was easier, but still not fun. He has slept for most of the day. So now, we are watching TV. We don't know what tonight will be like, but expect more seizures. We'll see.
Thanks again for all the prayers. We'll keep you posted.
Amanda