February 24, 2010

Another Seizure..Enough Already!

Yesterday Evan had a seizure and it was a big one. It's nice that he isn't having them every day anymore, but how quickly we are derailed when he does have one. Nothing makes me feel more helpless than watching Evan have a seizure. We watch at the sidelines as his body is gripped by something out of his control, out of our control. And we can't make it stop or can't take it away.

So we watch. We hold him, we stroke his hair, we tell him he's safe, we time the length or the seizure, we worry. This one lasted too long, upwards of 5 minutes -- we don't know eactly how long it lasted because when we woke up he was already having it. You start to worry at the 5 minute mark, it's when you administer a rectal medication to stop the seizure and call 911. Rob called 911, I popped the cap of the drug, and on its own the seizure stopped. Just like that it was over. Rob told the operator Evan was ok, that we didn't need an ambulance. Evan, exhausted, went to sleep. I went to work. Back to normal...but the reality is we don't have "normal".

We were more shaken by this than Evan who woke up a little while later saying he was feeling great and wanted to go to school. He missed the bus as he slept off the remnants of his seizure so Rob took him to school -- Evan walked in as if nothing had happened.

February 14, 2010

Happy Valentine's Day!

I just want to take a minute to wish everyone Happy Valentine's Day!

This photo is representative of Valentine's Day last year. A couple weeks before Valentine's Day we were in New York with another hospital visit and video EEG for Evan at NYU Hospital. We were staying at the Ronald McDonald House of Long Island and as I walked up to our home away from home, I looked down and this image stopped me in my tracks.

How fitting to see this just a couple weeks before Valentine's Day while walking up to a place who's tag line is, "The House that Love Built". I took the photo and didn't post it last year because I thought it felt like such a cliche -- love peeking though the snow... oh, please. A year later the photo still hangs in my mind so there must be something there. The truth is, when I was stopped in my tracks, I was feeling a bit sorry for myself. I had a child in the hospital, was tired from sleeping there, and was a little cranky about schlepping through the snow. I wanted to be home.

But here I was staring at a single brick that seemed to carry a message just for me. I have looked down at this walkway many times, each brick purchased by a different person and engraved. It's a long walk through names and families and I've been awestruck by the experience every time. I saw this word shouting at me from the ground and the irony was not lost. I lead a charmed life filled with love and I should never forget that. Sometimes a single word can have such impact.

February 13, 2010

Dear Seizure Diary...

Not too long ago, Neurology Now did an article about logging seizures and compared different ways of doing it. I'm so glad they wrote this because it is so important to understand an individual's seizure activity in order to provide doctors with complete information. Doctors always make medical decisions based on what we, as patients, tell them and we should take that seriously and give them the best information we can!

Seizure Tracker was mentioned in the article and we were really happy to see what they said...

Neurology Now: Dear Seizure Diary

Since the article ran we've been getting a lot of emails from people who got the magazine in the mail or saw it in a doctor's waiting room. It feels good to know we are making a difference!