February 23, 2008

SeizureTracker.com has launched!

Rob and I have been working on a passion project for months and it's time for me to take a minute to brag. We launched a website to help people living with epilepsy. The site provides a free, interactive way to log seizures, medication dosages and doctor appointments online. After entering information, a report can be created with a graph to show the number of seizures against the current medication levels. The report can then be printed out or emailed directly from the site. It's really a powerful tool and we are excited to have launched it! The response so far has been positive from both people using the tool and doctors viewing the reports. In the three months since we (very quietly) launched the site, over 200 people have set up accounts, logging close to 5,000 seizures.
check out the sample report!

When we learned Evan was having seizures, one of the neurologists we visited gave us a piece of paper with a calendar containing 365 boxes to track a year's worth of seizure activity. With the frequency of our son's seizures, it wasn't long before the sheet of paper was a jumble of numbers, notes and highlighted codes. We started looking for an online tool to organize all this info and when we couldn't find one, we started working out a plan to create one. We quickly realized the application could be helpful to other families as well, so we began thinking of how to satisfy our needs while expanding our thought process to cover a broader spectrum.

Rob has worked tirelessly to build the site and I am very proud of the end result and of him. For the last year I haven't seen much of him once the kids are in bed as he works into the wee hours, making improvements and adding functions to the site. It is his dedication that has really made this happen. I can't help thinking it was Rob's way of finding something positive to direct his energy toward since he couldn't stop Evan from having seizures. I came across a quote that made me think of Rob and his unyielding focus:

"If you don't like something change it; if you can't change it, change the way you think about it." ~Mary Engelbreit

My biggest role in the development of seizuretracker was quality assurance testing. I logged Evan's seizures and looked for bugs in the tool. I was basically the chief complainer, pointing out things that were broken or frustrating from a user perspective. We've had a lot of people who have also helped us make this launch happen. Rob's brothers, Chuck and Rich, have both offered technical guidance, often saving Rob from spinning in circles when he couldn't figure something out. Our friend, Sally, did the design work and really blew us away! We just love the visual ideas she came up with. There have also been quieter helpers: our parents and Rob's sister's, Mary & Becky, who have all helped watch the kids so Rob could steal away to the computer or attend meetings. I have to admit, there are some untapped resources out there among our friends and family who we haven't reached out to yet, but you know who you are. We just hope you don't screen our call when you see the number on your caller ID!

February 08, 2008


One thing we've noticed since Evan's surgery is that his imaginative play has really increased. Our theory is that his brain isn't seizing anymore so he isn't as tired. The areas we've noticed the biggest impact are his imagination, focus and verbal pronunciations.

Evan always had a good imagination and our house has always been filled with characters only he can see, but now we have to open the front door to let them in and interact with invisible birds and monkeys on a daily basis. They all have names and they are all "so cute". Sometimes it's a cartoon character from TV, but often the imaginary friends are animals and a LOT of them are named Thomas, after Thomas the Tank Engine.

Now that Aria is in elementary school, her view of the world is a little more serious and she is starting to dislike playing along with Evan's imaginary world. At dinner the other night Rob and I got a big laugh at their exchange:

Note to people without kids: "Super Why" is a new kids show and the characters (one of them is also called Super Why) are super heroes that help solve problems.

Evan: (on his invisible telephone) Hi...Super Why?...yeah, can you come over?...ok...so you'll fly right over?...great, bye.

Evan: (to the family) Super Why will be right over.

Aria: You know Super Why isn't real though, right?

Evan: Super Why is real!

Aria: No he's not.
Evan: Yes he is.
Aria: No he's not.
Evan: Yes he is.
Aria: No he's not.
Evan: Yes he is.
No he's not.

Evan: Hold on.
(Evan picks up invisible phone and dials)

Evan: Hi, Super Why?...yeah, are you real?...oh, you are real?...great, thanks.
(Evan pushes invisible button on invisible phone to hang up)

Evan: (to Aria) Super Why is real.

Aria shakes her head...can't really argue with that logic!