August 27, 2010


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 makes a mom proud!

August 05, 2010

Insert Expletive Here

We got home last night after several days of EEG monitoring and some medication adjusting and everything seemed to be going well. Evan's EEG was calm and I was hopeful we finally had a solid dose of meds to keep the seizures at bay.

This morning at 5:30 Evan had another seizure. (big sigh)

So tonight we upped his Keppra. Again. We have seen some improvement with this drug and as we've increased it, we've seen his seizure activity go from once a week to once every two weeks and most recently 2 1/2 weeks between seizures. Our fingers are crossed that with this increase we will have seizure control.

August 04, 2010


After four days of video EEG monitoring, we are going home! Evan's EEG was pretty clean witch is good and we are beginning the process of reducing his Trileptal. This is the last meal in the hospital after Evan had the EEG leads removed -- true bliss for the kids: chicken tenders, chocolate pudding with graham crackers to dunk, ice cream and to top it all off, watching TV while eating! Evan told the med student that he liked it there and wanted to stay 70 more weeks, to which the med student replied, "We'll leave at the same time!"

After leaving the hospital we went back to the Ronald McDonald House and after grabbing a quick bite to eat joined a House trip to Central Park Zoo. They shuttled all of us there and we enjoyed a private party at the zoo complete with ice cream. They fed the sea lions and put on a little show and then all the kids got to take a turn feeding them too! It was a great evening and a perfect way to end our stay in NY!

We are on our way back today and I think we're all ready to be home. We are keeping up with the tradition of leaving NYC seizure-free and are hoping to keep it that way!

August 02, 2010

NYU Hospital: Art Therapy

This is the most common scene in our room and it's not easy to tear them away from their DS games...

Unless it's for art therapy!