August 27, 2010

Sigh...

Anyone who knows me, knows I am pretty much always able to put a positive spin on things. I can turn any comment into a compliment and am generally a pretty positive person. It's a gift and a curse.

Right now I'm struggling with that very thing. In the last two weeks, Evan has had two seizures that have lasted over 10 min. The scary thing is that each seizure he has is longer than the one before. Just to give a little context: A seizure that lasts over 5 min. is considered dangerous and the concern of brain damage increases with the length of the seizure. Evan is having cluster seizures (lots of little seizures a couple seconds apart) so his brain isn't constantly seizing during the full seizure. We were told not to worry unless they reach 10 min. That was several weeks ago when they were only 5 min. long. Tsk, ONLY 5 min. long seizures -- I never thought I'd write that!

Every seizure requires us to give him a rescue drug to try to make it stop and they are happening in the wee hours of the morning in his sleep. Unfortunately they are also happening while we are asleep so we have taken to having him sleep in our bed so we'll wake up. The up side: we have a glorious new king sized bed... however, I'd share a twin bed with Rob for a lifetime if we never had to deal with this again.

Sleep, I've learned, is over-rated and craziness is something to embrace.

How does Evan feel about all this? In a word: unaffected. He wakes up in the morning, gets out of bed and acts exactly the same as he does on the days he doesn't have a seizure. Sometimes his balance is a little off but that's about it. Sometimes he remembers it, sometimes he doesn't. We talk about it at breakfast and go about our routine. I suppose this is the bright side I should cling to, that Evan handles it better than us.

I just looked at him, sprawled across or bed, somehow managing to fit across the whole king and I am reminded how lucky we are. Two great kids who fill our home with love and laughter...it makes a mom proud!

4 comments:

Elizabeth said...

if wishes were horses, than beggers would ride. If seizures were horses, I would shoot them all and let the beggers walk.

Mama Lisa said...

LOL, I love this and might steal it!

Zélia Figueiredo said...

Hello my name is ... and I give you my congratulations for their dedication, strength, and the positive spirit.

I am thrilled with the status of your son, I am also the mother of Diego with two years and also has tuberous sclerosis.

the brain has been operated with epilepsy a year. this, but right now, still has seizures, but very small ...

I leave you the link from my blog and link the group I created on facebook:

http://mylovestory-esclerosetuberosa.blogspot.com/

and

http://www.facebook.com/?sk=messages#!/group.php?gid=139995779350953

Zélia Figueiredo said...

best regards

Zélia Figueiredo