So Much Unknown

I have seen this quote many times over the years. If anyone knew something about perseverance, it was certainly Christopher Reeves, particularly later in his life. Parenting a child with special needs is certainly an exercise in perseverance. Elise was born a "neurotypical child" and became a "special needs child" due to a brain infection during cancer treatment. The last 10+ years have taught me much more, but perseverance is certainly one of the greatest lessons.

One of my greatest challenges on a daily basis is just the unknown. After more than ten years of this journey with her, there is still so much that we don't know! Elise does not talk, so getting answers from her can be a challenge. Don't take this to mean that she doesn't communicate, or that she isn't able to tell us some things because she certainly can. But, it doesn't look like what you get from a typical child. Sadly, the biggest "X Factor" for her is seizure activity. Our greatest source of unknowns for her is related to seizures and her brain.

The Morning After a Bad Day

Over the past couple of weeks, we have been seeing some increased seizure activity from Elise. So many times, over the past couple of years those increases can be traced to some type of infection. We are not able to always figure that out quickly and it is challenging to get help for her until there are enough symptoms to warrant a doctor visit or diagnosis. This time is no different. There is no easy answer for her. On Tuesday, things kind of came to a head and she had to get "rescue medications" at school to get the seizures to stop. I went to school to pick her up and see if we could get things under control at home. The first two rescue meds didn't really do the job, but the third one did and finally provided much relief for her (and me as well honestly). She was finally able to rest and had a quiet evening and then a much better day on Wednesday. Although, she was a bit sleepy in the morning trying to get those meds out of her system. The picture on the right is her waiting for the bus on Wednesday morning. She is awake, but I wouldn't say too alert.

Sadly, Thursday brought us much the same as Tuesday, although the time of day was different. She had a decent day at school, but had more than her "normal" amount of seizures. Just typing it helps me to understand how absurd that really sounds. There have been very few days in Elise's life in the last 10 years that she has not had a single seizure. She is a seizure cluster kids, which means she generally has shortly duration seizures, but tends to have them in clusters rather than just a single long seizure. We have seen some good improvement since summer and most days we have been able to be under 25 seizures for the day. Yeah, you read that right. That has really been the case these past couple of weeks, and this week in particular.

See the difference?

After a tough late afternoon and evening on Thursday, I finally had to give her a rescue medication late on Thursday night. I skipped steps 1 & 2 knowing full well that if step 3 didn't work, we were going to have to go to the hospital. But, doing steps 1 & 2 would have drug out the process for at least another hour. Fortunately, my plan worked and the "step 3" rescue med worked like a charm.

As you can see by the picture on the left, getting up in the morning after a hard night of seizures is not easy. I felt for her. Honestly, I might have even felt like her this morning. A little more sleep would have done me some good as well!

In talking with her neurologist today, he didn't really have any answers. Nobody really has any answers. She is complicated and there are so many unknowns! It can be extremely disheartening and frustrating at time But, that search for solutions and answers for her is what keeps me going every day.

We will never know all of the answers for her. I do know that. But, if I can figure out one answer, that is one more piece in the puzzle the next time something happens. I still haven't figured out the why for what is happening with her right now. It continues to be a work in progress. But, I will keep searching!