At what point do you realize that your life has changed so significantly that it can never go back to the way that it was. Does it happen with a sudden crashing event or are the changes so insidious that you don't truly realize the extent to which your life has changed until something forces you to look back, to revisit what your normal was. Once you arrive at this new state of being, do you ever get used to it?
Today was probably the worst day by far for Tatyanna. The lines between what was a seizure and what was simply ataxia became so blurred that it was difficult to tell what was going on. She had one complex partial at noon which quickly generalized into a full blown tonic clonic thus cancelling any plans we had of going to her school entrance meeting at the division office. The remainder of the afternoon continued much the same with Yanna so wobbly and "seizurey" (I don't think that's a real word, but it fits so I use it) that she couldn't stay on her feet. We managed to get her into the dr. who added on a new medication to her regime. As someone who likes to treat things as naturally as possible, I find the chemical cocktail necessary to my daughter's survival particularly hard to take. By supper things hadn't improved and we decided that an early bedtime was in her best interest. During the bedtime routine she had the longest seizure ever and had us scrambling to gather things to bundle her in for the drive to emerg. Trips to the emergency room are much more difficult to orchestrate when the mercury plunges to -25C. Just as we were about to head out the door the seizing stopped and although she was definitely postictal, her vitals were all acceptable so we opted to put her to bed with monitoring. The local emergency department has proven on past trips that they are completely clueless when it comes to children and seizures so we felt that risking what would probably be a pointless trip in the freezing cold was just not worth it. (Interestingly, this was also the point that we should have been going to the second slot of the school division meeting. If she didn't want to start school in the fall, I would have been perfectly receptive to a some sort of simple verbal cue as opposed to a day of seizures.) This truly sucks. Do you ever really get used to this? Does watching your child spasm uncontrollably ever get any easier? I wish I had some answers but none seem to be forthcoming.
To top things off, Lexi, my daughter with a flair for the dramatic decided to start running a fever. She never runs just a simple low grade fever. They almost always turn into a night of alternating tylenol with advil and luke warm baths just to keep them within acceptable limits. It's a good thing I got two hours of sleep last night as there will probably be very little tonight. Did I mention that coffee was my best friend? On the upside the older two kids have helped out immensely by not fighting. Miracles, they can happen!