Whew, I don't even know where to begin. The past week has been so hectic. I must apologize to anyone who may read this, as it may not make much sense. I welcome anyone who wants to read it, comment on it, or whatever. But I am just so totally confused right now and trying to be the strong one with my head on straight!

My four month old Chloe, a beautiful, blue-eyed, chunky monkey had her first seizures- grand mals, on June 3rd. Her new found neuro diagnosed her with a seizure disorder. I tried to have a been-there-done-that attitude about it. My five year old Aly, also beautiful but not so much chunky, had seizures as an infant also and has been medication and seizure free (I think..) for most of her life now. 

But I never had the internet before now. No one ever told me that I was wrong to believe that my kids would shake and jerk, and behave the same way with every seizure. There are so many things that I had no idea about! I feel so ignorant. I feel ripped off. I feel terrrified. I feel selfish. Mostly I feel the need to educate others, in hopes of making the world a little bit of a safer place for my daughters and other people who experience szs. I posted a bulletin on my Myspace last night, sharing a few facts that I have learned, and asking people to pass the bulletin on to their other friends. I added a link to this site's seizure first aid page. I hope it's a good start!

Yesterday started as normally as possible. I have been "sleeping" on the couch with Chloe in her playpen so that I can see her. I am more comfortable there because I am uncomfortable, if that makes any sense. I have reasoned with myself and with Jeremy (Chloe's Dad) that I wake up frequently when I sleep on the couch, and it gives me extra opportunity to check on her. Also, I am more likely to wake up to softer sounds because I don't sleep as deeply.

But the truth is that I don't sleep much at all. I am too scared to go to sleep with my newfound knowledge of the more subtle seizure types. I am afraid that I will miss something important! I try very hard only to sleep in the evening when Jeremy gets home from work, and for the hour between 4-5 am when he is awake and getting ready to leave. He doesn't know that I do this. I am afraid it will put a strain on our relationship, we don't even sleep in the same room anymore! We weren't together long before Chloe was conceived, and I being the one who has been through some of this before, try to be the strong one.

I quit my job after her szs presented themselves to us. I was working an okay job making pretty good money. I had just hesitantly returned to working after my maternity leave. I only say hesitantly because Chloe will be my last child, and I wanted to spend every possible moment with her. When all of this started happening to her, I decided that I didn't care if Jeremy almost (but not quite) makes enough money to pay the bills, or that my savings was quickly disappearing. I don't want to take the chance of my babysitter (as much as I love her) not noticing something that needs attention.

So here we all are, tremendously stressed out in several ways. Chloe was waking up from an okay night's sleep. Everything was indeed as normal as could be expected. She ate, pooped all over me and her bouncy seat, took a bath, took her medicine, and was really having a pretty good day. She has been increasingly vocal, even more so since she started taking Keppra. This day, yesterday, was no exception.

Around two o'clock she got fussy and I fed her. I noticed then how she kind of seemed to be spacing out while sucking on her bottle. Her eyes looked kind of sunken and tired even though she had slept normally, and they were eerily vacant. After finishing her formula, and pushing out a good burp, she began rubbing her eyes and sucking on her thumb. Those being cues that she was tired, I laid her down to sleep in her playpen.

Around 4:30, I was cleaning my house and chatting on the telephone with a friend. I came around the corner into the living room (on like my thousandth trip through the house) and I noticed that even though her head was turned away from me, that her eyes were open. It had become habit for me to stand over her and wait for her to look at me in hopes of recognizing subtle seizures. But this time she just kept staring. Even after I spoke her name.

Her legs wer tucked up close to her body and her left arm was sticking straight out to her side. Her right arm was also tucked close to her body, and that hand balled into a tight fist. I gently turned her head in another attempt at making her look at me. Staring.

Then I picked her up. I wanted to cry out (soooo badly) when her eyes rolled back into the back of her head. But Aly her five year old sister, was already pacing circles around me, asking what was happening to her baby sister. I took a deep breath or two, and a second to glance at the clock, 4:37. I laid her down on the couch, and her head rolled over to her left, and she just laid there staring for what semmed like an eternity. After a few seconds she began to shake and let out a stomach wrenching cry. She continued to cry for 15-20 minutes, and so did I, but at least it was over. However, I had heard that particular cry come from my daughter before.... I look at the clock again, 4:38.