Friday, February 25, 2011


I laid in bed this morning waiting for Ethan to wake up. He stirred and turned to me and asked for my hand. He loves sleeping with people's hands, don't ask me why. I gave him my hand and he closed his eyes to fall back asleep. A minute later the jerks started. I felt his body tense up and his arm and face jerk rhythmically. I kept one eye on him, and my other eye on my book and waiting for it to pass. I hate that seizures have become a typical part of my day, and unless he has too many, or they are different or changed it's just another norm. I guess it's ok. I read that of all the "catastrophic childhood epilepsies", Doose is the best one he could have.... That's a good thing, right?
Yep, I have perfect kids:)

Ethan goes up to the hospital in 9 days. I've started to stress. It's going to be a whole new life for us. Every day is going to revolve around food; food prep, food shopping, getting Ethan set down and forcing him to eat the food. I just got done reading the book Keto Kid, one of the books recommended by the dietitian. It has a huge recipe section which is great, but I was literally sick reading it. This diet is made up of mainly fat, and you actually serve your child half a stick of butter and a glass of heavy whipping cream with his meals. Ethan is in no way a picky eater, so we're hoping for the best. The diet is so restrictive, you wonder if he's going to be happy. He has so many seizures that most of his days are spent sitting on the couch watching TV. You never know when or where one is going to strike, and it can be extremely dangerous if he has one in the wrong place doing the wrong thing. Hopefully I'll have success training him a seizure alert dog, but more on that later:)
This is "playing" these days

I spend alot of time thinking about his quality of life. When you have a baby you think of their future. What are they're hobbies going to be? Will they love sports, or love books, maybe both? What college will they go to? What career will they take? What is going to define the person they are? You never think it will be the electrical surges through their brain. But then you tell yourself all I want is for them to be happy. I spend so much time worrying if he will be happy. We took away school which was his favorite thing ever. We took away playgrounds because they are way too dangerous for a child seizing constantly. We're taking away all his favorite foods next. (But until March 6th he is literally eating anything and everything he wants whenever he wants it, lol! McDonalds 3 days a week? Yep, and I don't feel bad about it at all!) When is he going to be happy? When will he be Ethan again?
In a firetruck.... Happy!

A friend wrote me an email telling me of a friend of hers who has a now grown child that had epilepsy as a child and wanted to know if I would like to talk to her. I figured her daughter had a typical childhood epilepsy, but non the less I was excited to speak with her and see how life was now that her daughter was grown. She called and we spoke for a while. I was shocked to hear that her daughter didn't have a typical epilepsy, but actually had Lennox Gastaut Syndrome. Ethan is on a "spectrum" between LGS and Doose so a half step above her daughter. She told me of meeting a great doctor at Children's (where Ethan goes) and him initiating the ketogenic diet which turned her daughters life around. This was probably 20 years ago but the strange part is this is the exact doctor that changed things around for Ethan. He was the first epileptologist we met, and he is the one that finally diagnosed Ethan and is the head of the ketogenic diet team. Pretty big coincidence. She told me her daughter can barely read or write, but she IS happy! It gave me hope. This doctor and this diet, the same as her daughter, might be just the thing that turns his life around and insures he's happy. What more could you ask for anyway:)

But the thing is, even now, he is happy. He's frustrated, and sometimes angry at how he is limited, but he is happy. How can you look at this boy and see anything else! And come on, any kid that can have a seizure  and still manage to interact with his sister at the same time is doing pretty good:) (seizure video warning: )

Playing with sissy

On a side note there is no way around it at this point, we officially have a walker! I'm so sad for my baby to grow up. I want her to stay little forever! In the past week she is officially walking significantly more than crawling. When did she go and grow up??! With the more vertical lifestyle is coming a few big falls. But with each fall comes a lesson and she picks herself up and never stops moving, just like mommy:)
Monster Baby!
Thanks for the bad habit Aunt Cole....
Got in a fight with the couch...
My walkin' girl!
Oh, and she can fly too!!! Yep, she's afraid of beards which translates to afraid of Grandpa, lol! She does everything she can to not touch him.
Super Taylor!

1 comment:

  1. I cant say that I understand what your going through with Ethans seizures but I can relate to you when you have a child with "special needs". My son has Autism and it was hard at first to acknowledge that he would be different in the fact that alot of the childhood milestones that his sister had achieve he never would or that it would be alot later than normal. But after I was able to take it all in, I saw all the blessings that he bought to my family and to friends. I cant imagine how hard it is to see your child having seizures all the time like Ethan. But I pray for Gods peace and comfort for both Ethan and you. And that in time things will get better and be easier. God bless both of you.