Let me begin this diary by saying that up until October of 1998 we had no idea that Nicole had Sturge-Weber Syndrome. She developed normally, walked early and talked early. She was a typical kid with a "red" face. Our only intention from birth until October was to do laser treatment to remove the birthmark from her face.
Tuesday-October 6, 1998....... It all began. Nicole had been sick since Sunday evening. We had been to the doctor for two days in a row. They thought she had a stomach bug. She was so weak she couldn't walk and slept for most of the day.
Daddy came home from work that evening and tried to wake Nicole. She finally opened her eyes and told him to take her potty. He had to hold her because she was so very weak. Then it happened....her first seizure began. Her left arm began to jerk and she was not responding to anything we did. We rushed her to the Emergency Room. The nurses and doctors surrounded her bed trying to stop her seizure that had started in her arm and was now affecting her entire body. After what seemed like forever, she stopped.
After a spinal tap, blood work and numerous other tests, it was decided an MRI was needed. We were transported by EMS to San Antonio to a pediatric ICU Unit at North Central Baptist. Everyone there was wonderful. At this point, our world had been turned upside down. Our energetic, happy, loving little girl was now heavily sedated and attached to more wires than I ever thought possible for a 3 year old little girl.
A cat scan was done first. It revealed some mild calcifications on Nicole's right side of her brain. We were still unaware of what lied ahead. The MRI was scheduled for the next day.