1st Day Update

I'll try to make this quick as the most amazing man on earth is super sleepy and I'm supposed to be getting quite a few hours of sleep tonight before one of my tests tomorrow.  As far as progress, today was good.  As far as seizures, today was bad. 

First, the Lord blessed me with a great Saturday.  I only had two seizures, which allowed us to have a super fun family b-day party focused on our sweet little one!!!  As you know, yesterday was a little crazy with lost luggage and not arriving at the hotel until after midnight...

So, this morning started with an MRI.  I had a seizure while in there.  So, we had to repeat one of the scans.  I have started to "tense up"/get a bit more tonic or shake in a few of my seizures.  This one caused a bit of a tonic reaction.  Then, we had a very uneventful blood draw.  We got to have some good morning hellos and we love yous with our precious little one.  We already miss her so much.

Next, I went for my EEG.  The glue that they have to use to attach the electrodes is a seizure trigger for me.  So, soon after we started the EEG, I had a seizure.  In the past, we've found that if someone speaks to me during a seizure, it seems to last longer.  So, each time I've had EEGs, they've left me alone.  As many of you read, my last visit to the Epilepsy Monitoring Unit (EMU) showed that my seizures are actually starting before I feel the physical manifestation.  Well, they found that again today.  All of the previous hospitals have said they don't want to intensify anything.  Mayo says, "we want to see the worst case scenario."  So, they don't mind triggering more seizures or making them last longer if they get to see the full manifestation.  So, as soon as they saw it on their screen (before I felt it) they came running in asking questions and trying to get me to open my eyes.  I have always thought I could open my eyes during a seizure if I wanted to, but that the lights, etc., were too bright and so I keep them closed until it's over.  Not so much.  I could not force my eyes open, but I was eventually able to remember the phrases they asked me to repeat back to them.

My sweet, sweet hubby made lunch for me and had it waiting for me as soon as the test was complete.  Next was a quick run back to the room to wash the glue out of my hair.  When we arrived, we found online that they had found both of our bags and they should be arriving this afternoon.  Yippee!!!! 

We made it back over to the Clinic to meet with the Epileptologist.  Today was the only day he could see me and he was apparently the one that would have to do the hospital admit.  As of our last visit, they had adopted two little girls from China.  Since then, they've adopted another little one- a boy!  He confirmed the need for retesting in the Mayo EMU.  This appointment was interesting because he seems to be deferring to the Neuro-Immunologist.  However, I had a seizure while in his office.  We think this is the first one he's ever seen.  He tried to run all of the Neuro Function tests that they want to do during a seizure.  I couldn't remember most of what he said (that I'm supposed to repeat back) and it seemed like he was screaming at me.  Ben later played back a recording of the seizure and the doc didn't raise his voice at all.  My hearing is just so sensitive during the seizures.

Next was an appointment with the neuro-immunologist.  He spent an exceptional amount of time with us.  What we heard from him is that he's willing to keep trying treatments, but that he doesn't really see that any of them are promising.  Since I've already had a seizure increase with the immuno-therapy-that should have helped, he doesn't really think the other types will make a difference.  He seems to believe that the autoimmune component caused the damage to my brain, but that it is not the current trigger.  Meaning the damage has been done.  His example was someone that grew up playing football and constantly injured their knee.  Now they are 60 years old and have arthritis and a super bad knee.  This doesn't mean they need to stop playing football and all will be healed.  They haven't played football since they were young, but the damage was done.  However, he's willing to run all of the necessary tests to see if there is a chance that the immunotherapy could work.

He stayed late with us and even gave us some good sushi recommendations.  As we were leaving, I had a pretty yucky seizure in his office.  Ben grabbed him and he came in to walk me through it.  So all in all while we did feel like we were making progress and will definitely know more by tomorrow what sort of game plan is being setup.  It sure was an exhausting day.  We'll continue to post more tomorrow.