I have spoken to our neurosurgeon's office in Rochester and Michael is definitely scheduled for surgery on Tuesday, August 21st at 6 am. We will be going down Monday night and staying at the Ronald McDonald House right in the hospital.
Michael has been doing very well since coming home from Rochester. With the exception of last Saturday, he has been seizure free. He came down with a cold on Friday and the neurologists tell us that any infection can lower the threshold for seizures and that is exactly what happened. Michael had 6 or 7 seizures on Saturday before things seemed to settle back down. It was a reminder to Mom & Dad that this new "normal" is just a fragile illusion.
We are thrilled to say Michael is back to being the happy, easygoing child he was before all this started. Prior to his stay in the hospital, (in addition to the seizures) he was sometimes aggressive and a couple of times had 2 hour meltdowns that would end with what we now know are the seizures. He had also become somewhat hyper and seemed unable to sit still for even a few minutes. Jeff & I thought this was an age thing or that we had just spoiled him too much (after all we had been spared the terrible twos).
In learning about his illness, we discovered that these are all symptoms of the tumor and it's location. The medication has definitely alleviated ALL of his symptoms and we have learned that under no circumstances can Michael be allowed to get tired (or we might see the return of Mr. Hyde).
On a positive note, Jeff is being allowed to transfer to the Alex Bay port when he returns to work after Michael's surgery. It's not the way we wanted it to happen but we will be glad to have him closer to home. We will keep you posted on any developments. Keep us in your thoughts and prayers. JoAnne