Around the time Melanie was born I remember noticing Kaylee, on rare occasions, would look off in the distance or stare at nothing in particular. She would sometimes talk in the softest little mumble that I couldn't really tell what she was saying, and sometimes she would point in some direction, but I couldn't see anything worth pointing at. I would try to ask what she was pointing at or what she was seeing but she couldn't tell me. I was hopeful that she was just seeing angels or something, and didn't think too much about it. As the new year progressed occurrences like this slowly became more common. I would occasionally talk to Joseph or my mom about it, but again, I wasn't too worried about it. While my mom and I were in St. George Kaylee had one of these occurrences again, which we had begun calling "episodes." I pointed out to my mom what was going on as we waited for the episode to end so we could go home. She was so unresponsive to things we would say, but she would repeat, "I'm okay," or, "I'm fine, Mommy" several times during the episode, would make a little low huming sound here and there, and occasionally point in some direction for no apparent reason. After church Melanie & I took a nap. When I woke up my mom said she had been googling Kaylee's symptoms during her episode, and she thought Kaylee was probably having an absence seizure. When I took Austin to the neurologist at the end of July I mentioned Kaylee's situation and that we had an appointment to come see the neurologist again for her soon. He suggested we schedule an EEG before hand so they would know better what was going on when we met. Kaylee was really good for the test. We had to wake her up at 4:45am so that she would be tired enough during the test to sleep for part of it. We dropped Lance & Melanie off at a friend's house and Joseph drove us while I sat in the back dancing and being silly with Kaylee to keep her awake. The technitian gave her "rainbow hair" for the procedure which she thought was pretty cool. She had to say the alphabet, blow on a pinwheel, and watch flashing lights. Then they asked her to go to sleep. When the test was done we woke her up and we went home. I left a little bummed out that I didn't see her have an episode the entire time we were there, but I had prayed that whatever needed to happen for the doctors to know what was going on would happen and I had faith that my prayers would be answered.
When we met with the Neurologist the next day he said that we were right, she is having seizures... and that they are happening a lot when she is awake and even more often when she is asleep. He said her episodes have characteristics of two types of seizures, absence and focal, and that they don't see two types occurring together very often so she is scheduled for an MRI on Oct 6th to help us understand what might be causing these to happen together. In the meantime, she is taking medicine that will hopefully control both types of seizures. We are also hopeful that she will be able to grow out of this condition in high school.
We sure love our Kaylee. It's a little hard to know she is only 4 and may have to take medicine every day for the rest of her life, but it is so nice to know that there are medicines out there that can control this and that she can still have a normal, happy life. We have had amazing friends be willing to watch our kids and make us dinners while we go to doctors appointments and adjust to what is now our new normal. I am so grateful to be surrounded by so many good friends and for the faith and prayers of those who love us too.
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