This is a brief amendment to the previous post: Step In Time. I realize tonight, that I forgot to write about something else that happens in time. Not about when time is fast or slow, but when it crashes. When time freezes in a horrible way. When time seizes uncontrollably, your heart beats blur like the wings of a hummingbird.
I'm still reeling from a shocking experience with Leo yesterday afternoon which totally brought this home to me. After a completely normal morning and nap, I noticed Leo suddenly developing a complete left sided weakness. He started tilting over, not moving his left leg or arm when tickled or prompted. He was acting anxious and clingy. My stomach sinking, I pulled out his emergency med so that it would be on hand. But even though I was watching for it like a hawk, for the next half hour or so, his left limbs were not jerking. So I'm ashamed to admit I totally panicked. Visions of brain bleeds, strokes, shunt failures were racing through my head, thoughts of all the freaky tragic unknowns, had my brain highjacked. I was the one in seizure here. I had no idea what to do or what was going on with Leo. Nika was in the bath, Justin was out running an errand, and here was Leo, slumping over and with eyes rolling back in his head.
Time crashed. I crashed.
Then like a little bit of sun peeping through a cloud, I gathered my wits enough to repeat the Jesus Prayer over and over, and over and over. In English, in Russian, in anguished mom speak I prayed. Leo, who was at this point held in my arms like a baby, would try smile lopsidedly but reasuringly when my eyes met his. My brain uncrashed and within minutes we were away to the hospital since at this point Justin returned and got the girl dried and dressed. Half way there Leo's foot finally started to jerk. We pulled over and gave him the med, and soon he was still and dozing in my arms. You might wonder why I say "finally." Well the jerking we know, we can deal with that. It is the other symptoms we aren't familier with. If it is just his regular seizure, it's ok then, we can deal with that, but the thought that it might be something else was what was so frightening.
We got a hold of the resident on call for neurology and she came down to the ER lobby to give Leo the once over. Then she explained that what Leo had was another version of siezure, called an atonic seizure which then turned into his regular simple partial seizure. Gee thanks for preparing us for that one! Just as I thought we had his "typical" seizures all figured out, something like this has to happen.
Can I say it strongly enough, how seizures are my number one enemy? Give me a surgery any day, something that I can prepare for, something that I can really wrap my mind around. Give me that any day, over seizures. Seizures that I can't predict, that always broadside me and make me completely loose my cool - my courage. How totally and completely they rob my child of his personhood, and lay waste to the sanity of those around him.
I hate them. I hate them. I hate them. But I mean to conquer them.
Even if I have to study every single book about seizures and the brain ever written, I refuse to give up. Just like we have to batten down the hatches when a big storm approaches, so I mean to do when a "brain storm" (as Nika calls them) threatens my little man's horizons. If time must crash, I mean to know every single trick out there to reboot the system and get time flowing normally and peacefully again.
After a fairly decent night's rest, Leo was back to his normal self today and I am again grateful for that new emergency medication that actually works twice now without a hitch. It also doesn't seem to last very long or give him any side-effects. Tomorrow we will meet with his neurologist (FINALLY) and I hope to bring up all these points and more with him. Wish me luck that I will get some answers...
I'm still reeling from a shocking experience with Leo yesterday afternoon which totally brought this home to me. After a completely normal morning and nap, I noticed Leo suddenly developing a complete left sided weakness. He started tilting over, not moving his left leg or arm when tickled or prompted. He was acting anxious and clingy. My stomach sinking, I pulled out his emergency med so that it would be on hand. But even though I was watching for it like a hawk, for the next half hour or so, his left limbs were not jerking. So I'm ashamed to admit I totally panicked. Visions of brain bleeds, strokes, shunt failures were racing through my head, thoughts of all the freaky tragic unknowns, had my brain highjacked. I was the one in seizure here. I had no idea what to do or what was going on with Leo. Nika was in the bath, Justin was out running an errand, and here was Leo, slumping over and with eyes rolling back in his head.
Time crashed. I crashed.
Then like a little bit of sun peeping through a cloud, I gathered my wits enough to repeat the Jesus Prayer over and over, and over and over. In English, in Russian, in anguished mom speak I prayed. Leo, who was at this point held in my arms like a baby, would try smile lopsidedly but reasuringly when my eyes met his. My brain uncrashed and within minutes we were away to the hospital since at this point Justin returned and got the girl dried and dressed. Half way there Leo's foot finally started to jerk. We pulled over and gave him the med, and soon he was still and dozing in my arms. You might wonder why I say "finally." Well the jerking we know, we can deal with that. It is the other symptoms we aren't familier with. If it is just his regular seizure, it's ok then, we can deal with that, but the thought that it might be something else was what was so frightening.
We got a hold of the resident on call for neurology and she came down to the ER lobby to give Leo the once over. Then she explained that what Leo had was another version of siezure, called an atonic seizure which then turned into his regular simple partial seizure. Gee thanks for preparing us for that one! Just as I thought we had his "typical" seizures all figured out, something like this has to happen.
Can I say it strongly enough, how seizures are my number one enemy? Give me a surgery any day, something that I can prepare for, something that I can really wrap my mind around. Give me that any day, over seizures. Seizures that I can't predict, that always broadside me and make me completely loose my cool - my courage. How totally and completely they rob my child of his personhood, and lay waste to the sanity of those around him.
I hate them. I hate them. I hate them. But I mean to conquer them.
Even if I have to study every single book about seizures and the brain ever written, I refuse to give up. Just like we have to batten down the hatches when a big storm approaches, so I mean to do when a "brain storm" (as Nika calls them) threatens my little man's horizons. If time must crash, I mean to know every single trick out there to reboot the system and get time flowing normally and peacefully again.
After a fairly decent night's rest, Leo was back to his normal self today and I am again grateful for that new emergency medication that actually works twice now without a hitch. It also doesn't seem to last very long or give him any side-effects. Tomorrow we will meet with his neurologist (FINALLY) and I hope to bring up all these points and more with him. Wish me luck that I will get some answers...
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| Leo and big sis monkeying it around on the couch. |
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| We are not going to let anything get us down, right little man? Because after all, you are one tough cookie. |
This is sort of crazy, but Avram had the EXACT same thing happen last week. Usually he just goes straight to the foot-jerking, but I got him up from a nap last Thursday and his whole right side was just limp for half an hour. I panicked just like you did. About half an hour later, his foot finally started twitching and I gave him the Diastat. It was so bizarre, and frightening. He seems back to himself this week. But I am right there with you mama, seizures make my blood boil. Prayers your way!
ReplyDeleteLord, Jesus Christ, Son of God, have mercy upon us.
ReplyDeleteLord, Jesus Christ, Son of God, have mercy upon us.
Lord, Jesus Christ, Son of God, have mercy upon us.