That's right, I've been waiting for the right time to use this title since I started. I'm witty like that. And a little twisted.... but I have to find humor in all of this somehow. :) Now for the update:
It's official. My son has epilepsy. I know. You're thinking, "But, your first post said he doesn't have epilepsy, he has infantile spasms. I'm so confused!" As was I. But, I think I have a better understanding now. Apparently infantile spasms fit under the larger umbrella of epilepsy. The spasms are just one of the ways that epilepsy can present itself. The good thing is that Levi doesn't have hypsarrhythmia (those bad brain patterns that can cause cognitive delay), which usually walks hand in hand with the spasms. The stinky thing is that he has epilepsy. In other words, the EEG showed that he has a low threshold in his brain for seizures and, therefore, he has seizures. Thus. Epilepsy. The spasms are the way we first saw it presented, but he could have any kind of seizure.
All of this was FINALLY explained to me, yesterday, in a very clear manner by Dr. Q. We like Dr. Q. He's a good guy. He's helping my son so of course we like him! Along with explaining what's going on in Levi's head, he explained how we're going to manage Levi's seizures. So, the new medicine that I spoke of in my last post... the yucky one.....the one I don't want Levi to take..... yah, Dr. Q said he has to take it. He let me know that he would NOT prescribe medicine that isn't needed and that this is one of the most successful medications in preventing seizures. He also said that the doses prescribed to Levi should have minimal effects on him at this age. So, the plan is this: Over the next week and a half, Levi will complete his round of steroids which will also cancel out his need for Zantac and the antibiotics. So, we get to remove three of his meds! But, we started the yucky one tonight.
Levi will continue to be on this one until he has been seizure free for two years. That's right, TWO YEARS. It seems like forever. We'll continue to have intermittent appointments and EEG's. The next one is in two months and we'll go from there. Dr Q did say that we'll have to continue to keep Levi under CONSTANT surveillance. And I quote, "If you need to use the phone, keep the phone in the room with him. Don't leave him in a room alone." WHAT?! How am I supposed to cook dinner without him in the kitchen trying to throw himself into the oven? How am I supposed to go to the bathroom? Take a shower? (That last one already seems to be rare enough as it is)
And the answer is.......
(Drum roll please)
DO IT. I just have to do it. Sure it will be trying, but what can I do? Throw myself onto the floor kicking and screaming? Quit cooking and peeing and showering? None of that will solve the problem. It won't get anything done and it certainly won't make the seizures go away. I just have to do it. At this point, you might be thinking, "You go girl! Way to have a positive outlook! Way to stay strong!" But, in all reality, the real reason that I'm writing this is because it's true. Not because I'm excited about it or remotely want to "Just Do It" (Thanks alot, Nike!), but because I have to. And this is me telling myself that. I have to make the most of this season of life, whether it lasts two years or ten years. I really do want this to make me into a better and stronger person. Right now, I don't feel like that strong person. I feel emotionally and physically exhausted and I really don't know how I'm going to do it. But, I do know that if I can truly rely on the grace of God and find my rest and satisfaction in Him, I can do anything. (Now to get that from my head to my heart!) As daunting as this is, I know I'll make it through. We all will. And if I can truly seize the day (ha! there it is!), I'll come out of this a stronger, better person and, hopefully, an even better mother.
I'd say that's true for all of us and our trials. We all have them. Maybe it's seizures, maybe it's finances, maybe it's rebellious teenagers. But, if our prayer through these times can be, "Lord help me learn from this what you want me to learn. Help me become who you want me to be," that's when, I believe, we truly learn to Seize the Day.
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