Tuesday, September 20, 2011

seize the day

dear little leah, 
i'm just going to go right out and say it: you scared the crap out of me today. and last tuesday. 

i think you may have had your first seizures and i really don't like it. really really. 
last tuesday morning, you were still kind of waking up and were lying in my bed. you went stiff as a board, your eyes kind of rolled back, but mostly just glazed over with an eerie, vacant look and there you lay for about a minute. 

i was calling your name, trying everything i could think of to bring you back to me. eventually, you just did it on your own timing. and then, right after you "came to," you did this strange movement with your mouth, for about 30 seconds, as if you were tasting something in your mouth over and over, kind of small licks with your tongue. 

after that, you were fine all day. phew. 

then this morning, it was almost a repeat. you were sitting in my bed this time when your body went stiff and fell backward - luckily, onto dad's pillow. you had the same look in your eyes and were completely glazed over with your mouth open for at least 30 seconds. i know that doesn't seem like a long time, but it felt like an eternity in the moment. this morning when you came back to us, you did some intense teeth grinding for about 30 seconds and then you were just fine. 

your teachers said you had a great day - you participated, said "moo" at the cow puppet, banged on the drums {3 beats each time, just like the music teacher}, checked out a book at the library, went on a walk that included stairs and splashed in the water tub. 

in the car on the way home, you got a little teary, so i figured we could cuddle on the couch. during our cuddle, you lost all tone and did that creepy eyes-roll-back-mouth-opens-and-drool-comes-out thing you often do {not a seizure}, and then you were fine. 

about two hours later, i had to send an email, so i came into the computer room and you followed me. i turned around and my reflexes were about 3 milliseconds too late because you went stiff as a board and fell, flat onto the unpadded carpet {yah, i know, it stinks that our carpet has no padding!}. you whacked your head good. usually when this happens you roll into it to soften the blow, but not this time. this time you were straight as a board. but you came right to...i scooped you up and the crocodile tears started flowing. so i didn't leave your side for the rest of the evening.

if it weren't for the cuddles, i would have completely hated today altogether. let's not seize these kind of days anymore, huh? they make me nervous for the days ahead. although, next time i hope i'll have the presence of mind to whip out the video camera so i can tape it for a medical professional. {i did call them today, by the way. and we're getting you all set up.}

love you. love, 


  1. oh maren. dont know what to say. hope its a fluke thing and that it doesnt happen again. let's talk soon ok? on the phone. (im trying to get better at that) hugs.

  2. i didn't like hearing her cries today. and i must admit, i was crying after our call just hearing about it. bean, let's not scare your mommy, ok? i love you guys and hope you can feel the loves and hugs from AZ.

  3. Oh maren- my heart aches for you right now. I pray they find something that will work for sweet Leah. Please know I am here of you ever need to talk. I know it is different but I would agine the emotions are the same. Right now as I read this I am waiting for Q to start into one. Hopefully I am wrong. No matter how long I've been at this the pain is still there. Hang in there. Love you.

  4. hugs from chicago...i can only imagine how NOT fun watching that must be.

  5. Oh Maren, I didn't know it happened again in the afternoon. I'm so sorry. You know I'm right down the path if you need anything.

  6. I'm so sorry, Maren. It's so hard to watch our girls when they are not in control of what is happening to their body. I'll pray that it will pass, and Leah won't scare you with anymore of these episodes.