Rachel was a bit nervous going to the State Science Fair, and not for the same reason most of the kids were. Having seizured for the judges at County, she didn’t want a repeat performance on that score. Luckily she was fine, and it was a really fun experience.
Of course, the entire trip wasn’t seizure free, but hey: now she can say that she had a seizure on Hollywood Boulevard.
We really enjoyed a month without seizures, especially as it included Spring Break! We went to central Florida, where we enjoyed visiting Kennedy Space Center, St. Augustine, and Disney World. We also visited Crystal River, home to many wild manatees. At a refuge there we found the actual manatee that Rachel had adopted following her 8th birthday party. Rachel had asked for donations to Save the Manatees instead of presents, and one of the boys brought his piggy bank to the party to empty into Rachel’s donation jar!
The no-seizure month came to an end in mid-April. After two seizures within a week, we called her neurologist. She doubled the dosage, to one pill in the morning and one pill at night.
Unfortunately, this didn’t seem to help much, and Rachel continued to have seizures into May.
So now we knew there was something in Rachel’s brain (well, something that didn’t belong there anyway), but we weren’t sure what to call it. Doctors seemed to like calling it a tumor, but we did NOT like that word. Usually we just called it a lesion.
When we asked Dr. Cheyette what “it” was, she said that there was no way of knowing without taking it out, and that it was most likely a dysplasia. This is just a general term for something didn’t develop properly. In other words, it was probably something that had been in her brain since she was inside her Mama.
One day Rachel was trying to remember the word “dysplasia”, and she called it a displosion. The perfect word! A dysplasia that had exploded into our lives. A Displosion.
Now you know.