Tuesday, May 6, 2008

When Seizures are a Good Thing

05/06/2008

Last night, about 6:00PM, Jessie had a bad Complex Partial Seizure, that wouldn't stop. We should have known something was up, when she didn't want to wake up that morning and I had to let her sleep extra before taking her to school. Plus on Friday night, she had 7 small seizures; the most that we have seen in such a short time period. So, we had to administer Diastat to stop the seizure, and luckily it did stop. No ambulance was needed. She slept hard for an hour or so, and then woke up like nothing happened. The great thing about these, is that she doesn't know that the seizures happened. This morning, she was back to herself again and ready to go to school. What an amazing soul she is.

It has been over a month since she has had a bad seizure, and even her mild ones have been few and far between. She had done pretty well lately, except for the constant twitching in her hand and eyes, which IS seizure activity. So, in line with the nature of this cruel disease, we were beginning to think things like "maybe she is getting better" or "maybe we won't have to do surgery" or "maybe we're doing the wrong thing". This week was a good reminder that things are still progressing, and we definitely are making the right decision, and a hemispherectomy IS the best thing for Jessie long-term quality of life.

So, although Kristi and I despise seizures, and although we now quietly refer to Rasmussen's Encephalitis as "The Monster" (not in front of the kids), we are somewhat relieved to see the bad monster coming in to smash-up Jessie's world for a while. I know that sounds cruel on the surface. And I guess it is a bit selfish on our part. But think about it....With each seizure, comes comfort for us in knowing that we are making the right decision. We are giving Dr. Carson permission to permanently disable our daughter both mentally and physically yet the Monster has to be stopped or it will ultimately win. So we are giving Dr. Carson permission to kill the monster and give Jessie peace from seizures.

I'm sure that the monster will mess with our minds some more before surgery and torment our sweet little girl, but on June 11th, it will be over. We'll pick up the pieces and come home.

1 comment:

tisdale said...

I understand totaly what you are saying, when your not sure if your making the right decision, than something happens to the worse and you are reminded you ARE making the right choice.
Our surgery date is around the cornor, starting to get nervous. May 20th.