We spoke about the recent revelations that the CSF tests have given us. He concurred that KayTar doesn't really fit the typical picture, then he said, "But KayTar has never been one for typical." So very true. He agrees that the testing plan is a good one.
While I had him on the phone, I brought up the recent light sensitivity, because it is getting a little ridiculous. Saturday at Jenny's, KayTar was able to be outside for about 20 minutes, which is the longest she's been outdoors in at least two weeks, probably closer to a month. The light sensitivity has gone from something that happened only alongside episodes to an almost full time condition. Even behind sunglasses or tinted car windows it is too much for her to bear, if she is facing into the sun. If the light streams in the car window, she is thrashing and shrieking. Even with sunglasses on, I have to put her blanket over her head to walk into the therapy building from the car. We were supposed to go on vacation this week, but we had to cancel because it would be torture for her to have to be in the car for a prolonged period of time. He said he didn't really know what to make of it, but he would think on it and get back to me. He also recommended calling the ophthalmologist and speaking with her. KayTar had a normal eye exam in April, but this was not happening at that time. Her eyes have also been crossing some, in addition to the deviating we typically see. I put a call in to ophtho and we now have an appointment for Halloween. We also have a weight check appointment with the pediatrician on Halloween. Double header, gotta love it.
When we got that call last Tuesday, I remember feeling like the whole world had sped up. Everything was moving so fast after a year of moving at a snail's pace. Try as I might, I can't quite reclaim that high. It has been replaced by the feeling of normalcy, our normalcy, which probably isn't normal in the least. The testing and waiting, the phone calls and questions, the symptoms and appointments; these things have been our dance, the rhythm that marked the passing of seconds, minutes, hours, and days.
The seconds it takes to fill out a lab request form; the minutes sitting in the chair, restraining KayTar long enough to get a good stick; the hours we wait for a urine sample; the days it take to get results.
The seconds it takes to dial a phone; the minutes it takes to ask a question; the hours it takes for the message to get to the doctor; the days and sometimes weeks it takes for a reply.
The seconds before her eyes come back down where they belong; the minutes we are allowed to stay outside; the hours it takes for an episode to end; the days we have between them.
It is our dance and we've learned the steps well, but in light of the phone call last week, I can't help but entertain the thought that maybe one day soon, we'll have a whole new dance to learn, with a rhythm marked only by the beating of our hearts, the ticking of the clock, and the rising and setting of the sun.