After months of waiting and wondering, we found out some positive news today. We have been given the green light to proceed with surgery! All of the testing indicates that Seth is a good candidate and we have made the decision to go ahead and schedule surgery.
The surgery is actually a two part process. The first step involves them placing a grid directly onto Seth's brain surface in order to pinpoint the exact area where his seizures originate. Once the grid is placed, it would remain in place for at least several days and Seth would need to have at least one seizure. During this time, they would also map out Seth's language and movement areas. If the seizures originate within either of these areas, surgery could not be completed safely, they would remove the grids and we would not move forward. Otherwise, the next step would be the surgical resection in which they would remove the two areas where Seth's seizures originate. Best case scenario, Seth would have a 50-70% chance of becoming seizure free.
I feel both relived and terrified with our decision. I am so thankful this is an option for Seth, and hopeful that we get continued good news from here. We should know shortly when the surgery is scheduled and will continue to prepare Seth and the rest of our family for what's to come.
Wednesday, June 20, 2012
Wednesday, June 13, 2012
Little Disappointments
Sometimes I hate the way seizures disrupt our lives. Today is one of those days. Not only do I hate what they do to Seth, I also hate that they affect everyone else in the family too. I hate the way they sneak in and surprise us on an otherwise normal day. I hate the disappointment when our plans suddenly change. And most of all, I hate that I can't just fix it.
Today may have been the most gorgeous summer day we've had yet this year. As luck would have it, I had the afternoon off work, so the kids and I had planned to spend the afternoon enjoying the zoo. We piled into the van and headed North on the interstate. I noticed that Seth had fallen asleep in the van, and while not completely normal, it happens occasionally. We were more than halfway there when I heard a strange noise coming from the back of the van and realized Seth was seizing. We were near an exit, so I quickly exited and pulled off the road to monitor him until the seizure ended. The seizure was a longer one, lasting nearly five minutes. The other kids realized our plans had changed, and once Seth was able to respond, we started the drive back home.
Seth slept until we were a few minutes from home. When he awoke, he asked where we were, and I told him we had to come back home because he had a seizure on the way to the zoo. I immediately saw the disappointment and anger sweep across his face. The other kids were disappointed too, but they understood and are pretty good at rolling with it. Generally I'm okay with it too, but today I just allowed myself to feel the disappointment, even wallow in it a bit. Because tomorrow is a new day and I'll find the hope in that.
Today may have been the most gorgeous summer day we've had yet this year. As luck would have it, I had the afternoon off work, so the kids and I had planned to spend the afternoon enjoying the zoo. We piled into the van and headed North on the interstate. I noticed that Seth had fallen asleep in the van, and while not completely normal, it happens occasionally. We were more than halfway there when I heard a strange noise coming from the back of the van and realized Seth was seizing. We were near an exit, so I quickly exited and pulled off the road to monitor him until the seizure ended. The seizure was a longer one, lasting nearly five minutes. The other kids realized our plans had changed, and once Seth was able to respond, we started the drive back home.
Seth slept until we were a few minutes from home. When he awoke, he asked where we were, and I told him we had to come back home because he had a seizure on the way to the zoo. I immediately saw the disappointment and anger sweep across his face. The other kids were disappointed too, but they understood and are pretty good at rolling with it. Generally I'm okay with it too, but today I just allowed myself to feel the disappointment, even wallow in it a bit. Because tomorrow is a new day and I'll find the hope in that.
Wednesday, June 6, 2012
Time Marches On
The last couple weeks have been blissfully uneventful on the seizure front. In that time, the school year has ended and summer is off to a good start with graduations and family get-togethers. Seth has been seizure free since Mother's Day and seems to be doing well. Time continues marching on and we are thankful for each day that passes without a seizure. So far this summer, we've had a couple opportunities for swimming at Lake Erie and my brother's pond. Due to the risk of seizure, Seth has to wear a life vest when swimming in murky water. Although this isn't his favorite thing, he has been cooperative and only slightly pushes the limits. I know he doesn't understand the danger, but that's okay. That's my job.
We have a follow up appointment scheduled with Seth's neurologist/epileptologist in two weeks and I'm not sure what to expect. I'm anxious to hear what is next and where we go from here. I don't know whether we can move forward without the ictal SPECT, or what new information may have been obtained from his most recent inpatient stay for long term EEG monitoring. I look forward to learning what's to come and am ever hopeful that we are one step closer to seizure freedom for Seth.
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