Seizure Meds?

Dearest Samantha,

You have been such a little gem the past two days.  You have quite honestly glowed and it's been so fun.  Today, in particular, you were a delight.  I'm talking pure delight.  Good stuff there.  You smiled a ton.  You giggled.  You enjoyed a 2 hour walk with me without complaint.  It was a good day.  And, though I'm not sure what will happen tomorrow because of it, we forgot to give you your seizure medication this morning.  And it just makes me wonder...how is this stuff really affecting you?  I mean, I know it helps with the seizures, but how does it make you feel?  I wonder if it makes you sleepy and thus, irritable sometimes.  Though, honestly, you are usually a happy girl, but even still...I wonder.  The days we have forgotten your morning dose (we are responsible, I swear), usually on rushed Sunday mornings, you are purely magical...people become even more smitten by your smit-ability.  My dear, you are quite charming.  But, we will continue with the medication until you are stable (seizure free) for a year.  Sorry.  Doctor's orders.  We'll see.  But I sure love you, even when you're a little cranky.

Forever your mommy I'll be.
Mommy

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!

Heartache

Sweet Samantha,

Today my heart aches. Last night, you had a very rough night. I wasn't sure why, though I assumed it was your cold. You woke up Callie, and I ended up "sleeping" in your room the rest of the night (which as you know means I didn't sleep at all). We didn't go to church today. At 4am, I decided we weren't going to church today. Around 5am you had a seizure in my arms. That hasn't happened in a while. Poor sweet girl. You were asleep when I heard the clicking sound in your throat -- you struggling for air I've always assumed. I put you on your side and begged you to come out of it quickly as I realized I only brought one Diastat to Michigan with us, and I always like to have a spare. You came out of it and began to kick your legs pretty severely as you've been doing the past 6 months or so when you come out of your seizures. Then, surprisingly, you feel right back to sleep in my arms. I've been going to the chiropracter here to fix my neck pain from the car accident, and I'm finally feeling normal. But after last night, my neck isn't feeling so pretty again. It was worth it. Every moment.

My heart isn't necessarily aching because of your seizure. Those suck. Let's be honest. I hate that you have them and it makes me sad every single time. Luckily, professionals believe there was a loss of consciousness during grand mals, so hopefully you don't remember much when they are done. What is really aching my heart, however, is news that we received this morning about a friend of ours. Their son, about 26 years old, is married and they have a baby. Last night, he had some seizures, and is now in the hospital with no brain activity. His seizures were the result of a different problem that occurred, but it still makes me fear for the day when you have a seizure, and that's it. I'll hold you in my arms as you convulse, but you won't come out of it. And instead of my heart aching, it will shatter. And I wonder at my ability to pick up all the little pieces. What would I ever do without you Sammy? I ache for our friends who are now suffering. I think about how much pain I would feel if we were to lose you, and we've only had 4 wonderful years with you. They are sitting in the hospital remembering 26 years of love and sacrifice and...love. Oh how I ache for them, and so much dread that day for us.

I do find peace in knowing that families are forever -- but the pain, I know, is still very real. I love you sweet girl. You are the sunshine in my life. You are amazing in all ways. You just light up a room with your smile, and you have lit up our lives. I'm not sure how it all worked out, but I'm sure lucky to be your mom. I love you with everything I have in me.

You'll always be my baby girl.
Mommy

Pictures of you January, 2008.