Friday, September 17, 2010

Not Fun

(PT would not be happy seeing her sit like this! Oops)

This happens every time...and I still never learn. I read about everyone's kids and their seizures, and I remember. I remember the days with 10, 15, 20 seizures. I remember using Diastat every other week. I remember taking turns each night with Marcus, sleeping with Samantha on the couch, just in case she had one and we had to give her Diastat. I was so afraid that she would have a seizure in the middle of the night and not wake up.

We played around with her medicine and dosage quite a bit. Nothing really worked. I started doing craniosacral therapy with her, and amazingly, things started to slow down. She was stable enough that we were able to wean her off of one medication completely (phenobarbital), and lower her incredibly high dose of Trileptal. We did craniosacral therapy for about a year. I found therapists who were kind and gave me a great deal. When we moved to Spokane, WA, our insurance actually covered it and we loved our Shauna! Samantha just loved her. I think she (Samantha) could tell that she felt better when she saw Shauna.

It's been almost 2 years now where I feel like things are relatively stable. Due to the Green Family Funds, we don't do craniosacral anymore. Maybe we will again soon if I can find someone. But even still, Samantha does pretty well. And when I read about seizures again, I can't help but ache for all these parents, and then also think, "Oh I'm so glad we're passed that."

And then something happens like this morning. Samantha has a cold. I am holding her as she is trying to fall back to sleep. I think she's asleep when her head suddenly jerks up. Her body goes stiff, then begins to curl in a little, and I hear the noise...the noise in her throat -- the clicking. We think it's her tongue. She doesn't breath. I put her on her side so the saliva can come out (we've learned from past experience that if we don't do this she often vomits after). I whisper in her ear, "Come on Sammy. Come on. It's time to stop. We're all done now. Come on. Come on. Coooome on sweetie. I'm here with you. It's ok. It's ok. It's ok."

It's not ok. It's really really not ok. Her seizures are relatively short now. 1-3 minutes. It looks as if she isn't breathing, but she gets enough, they say, during that short time that she should be ok. And when I asked her neurologist about her dying from a seizure, he tells me how relatively rare that is. Usually the seizures are secondary to something else that cause the death. But it still bothers me. And I still think about it.

I laid in Callie's bed with Samantha this morning for a long time. She was sleeping, but I didn't want to leave her. I let Callie watch some tv while I just held Sammy.

And then, once she was up, she was fine. You would have never known that her brain went haywire just a few hours previous. Seizures are NOT fun. Never. No matter what. I am grateful for her progress, but I still feel a little deflated every time she has one, and I'm reminded that this is real. That as great as I feel, as optimistic, as wonderful as I can feel about things....Samantha's fragile life is real and there are things that will happen that I don't like...that I will never like. I guess I was in need of another reality check or something.

At least she's still so dang cute!


  1. so sorry, jenny. give that sammy an extra big hug from me today. and one for you too.

  2. You know my feelings on seizures. They SUCK! I am sorry that Sammy had one this morning. What a relief that she has only a few relatively short seizures though. I know that doesn't make a damn bit of difference when she's in the middle of one. ((hugs))

    I think we need a village where all of us live together so we can talk and cry and yell and take turns staying up with our kids. :)

  3. Love you Jenny! She sure is cute :)

  4. You're darn right she's CUTE! :) I was fortunate enough not to really have to deal to much with seizures. I'm grateful, but my heart breaks for the kids that do. She sure is a fighter!

  5. This is another beautiful picture of your blond beauty :) I love reading her story, and of how strong not only you two are for her, but how strong she is for herself! Wonderful!



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