I've been doing a lot of reflecting today...
This evening marks the one year anniversary of Jonas' first seizure. I was still over the moon excited about a very unexpected pregnancy, that I had just found out about the day before, when it happened. I have never in my life been so out-of-my-mind terrified while it was happening. There have been some doozies since, like the first day the doctors told me I ought to consider brain surgery for Jonas. Yeah, I was so physically ill over that thought that soon after the phone call I actually threw up. Then, there was the phone call where we discussed the fact that Jonas was not a candidate for that particular type of surgery. I cried huge body racking sobs for hours. Scared to death of the ketogenic diet, we did it anyways. Unfortunately, that has not been our answer either. We have weaned him off the diet and he is again on a normal 4-year-old-boy diet which is great (the keto diet was SO incredibly hard on both him and me), but we are still without control over these seizures. We recently started him on his 6th, nope, I think it's his 7th anti epileptic drug (AED). We've surpassed all the "normal" first-line options have have moved on to the stronger/scarier side effect ones.
We are still in a state of uncertainty, but keep looking forward and hoping for a bright future for our Jonas. Please keep the prayers on Jonas' behalf coming, we need them! Thank you for all the love and concern over the past year! Epilepsy is a marathon and we are deep in it.
