EEG in Long Island

Evan is having a multi-day ambulatory EEG at Cohen's Children's Hospital in Long Island. This is the first time he's had an ambulatory EEG and it has meant that he is not in a hospital and is free to move around.

In the wee hours of the morning before we got to NY Evan had one of his typical seizures so as we drive up to NY we figured this trip wouldn't give us a lot of info unless something is going on that we aren't seeing.

Last night Evan surprised us with a seizure on the last night of his EEG. I hate the seizures but I'm glad we finally caught one for his doctor to look at -- I just hope the machine is working and all the leads are still connected! The down side is that this seizure was only four days after the last one and we don't want to see them happen more frequently.

We've been staying at the Ronald McDonald House of Long Island and last night they gave us tickets to see the Globetrotters and meet a few of the players before the game! It was amazing! We didn't have anything for them to sign so Evan had them sign his EEG cap!

Seizure Watch

Life with epilepsy is complex to say the least. We chase after freedom from seizures for Evan, trying different medications, enduring different tests, wishing on stars and praying to a God that remains static.

It's been 14 days since Evan's last seizure and this is longer than usual. These longer periods of time between seizures used to offer relief and hope but now those feelings are all too often tainted with fear and anxiety.

I'm next to Evan in the dark, watching him sleep, listening to him breathe. I don't know if he'll have a seizure tonight but I don't want to sleep too soundly in case he does.

I'm tired of the epilepsy routine that has taken over so much of our lives. I'm not sure what we should be doing differently but I think we need to figure that out before it starts to take a toll on Evan.

If Evan Could Change One Thing...

Tonight at dinner the kids were talking about their lives and Aria said, "I'm pretty happy with my life and there is very little I could change to make it better, very little!"

Then Evan said, "Me too. If I could change one thing to make my life better..." I'm thinking he'll say Pokemon cards, DS games, iPod, etc. and then he looks at me and says, "and maybe you can help with this mom. The one thing that would make my life better is no more seizures."

That one little sentence shows the irony of the lives we are living. Evan trusts us and believes in us and our ability to fix the problems in his life and yet if this is his one wish, we let him down every time.

When he was little I used to think it would be easier when he'd be able to talk about his seizures and what it's like to live with epilepsy but I was wrong. Being more informed is better in many ways, but never easier.

Christmas begins with a Seizure

It's almost predictable in the epilepsy world to begin Christmas with a seizure. I don't know if it's the excitement leading up to Christmas morning or simply Murphy' Law rearing its ugly head.

It's not the first year things have gone this way for us and I know of a lot of families dealing with seizures on Christmas. The lucky ones don't call 911 or visit an ER. It puts a unique twist on how the morning and the rest if the day goes.

For our family there were no 911 calls and for this we are thankful. Evan was groggy and seemed to be going through the motions as he opened his gifts until he opened Pokemon cards and Beyblades of course. By the afternoon he was back to being his normal cheerful self and loved going to the Chinese restaurant for Dim Sum.

We have so much to be thankful for and we say this everyday. Maybe Santa will do better with my single wish next year.

Seizures are Serious

Last night we were talking with Evan and out of the blue he brought up one of the more serious impacts of epilepsy. He said, "I know seizures are pretty serious and sometimes people die from a seizure...but it's very unlikely that would happen to a child, right?"

Rob and I exchanged glances not knowing exactly what to say. Do we tell him that children do die from seizures? Do we say that we just heard of a 6-year-old child who was taken from this world too soon? Do we confess that this is our biggest fear? No, that reality is too cruel and too hard to comprehend at his age. Instead we nodded reassuringly.

That conversation hung with me all night. I'm not ready to have a conversation with Evan about his mortality and I don't think he is either. I know our choice to avoid this conversation is right for the moment but I also know we need to figure out how to tackle this tough topic.

Then at a little after 11:00 we heard Evan kick the wall and make a strange noise. We rushed onto his room to find him having a seizure. We gave him the medication to stop the seizure and waited...6 minutes. Too long but not as long as the last one. I couldn't help thinking about his comment earlier in the evening and that we were once again spared from my biggest fear.

New Member of the Family Coming Soon!

Now that I have your attention, I am NOT pregnant! Evan has been approved to receive a service dog that will be trained as a Seizure Assistance Dog. It will probably be roughly a year before this all happens but we are very excited about it.

The first thing we have to do is fulfill a fundraising commitment to 4 Paws for Ability who will train a dog specifically for Evan. We will be raising $13,000 and have just begun this endeavor.

If you want to keep us with our progress, we have a blog set up and you can sign up to get email updates as well:

www.dog4evan.com

I know that this marks the beginning of a new chapter and we are all very excited about it!

Who is Evan?

If I had to use one word to describe Evan, I’d choose comedian. He loves to tell jokes and make people laugh and his comedic timing is beyond his age. He is also charming, sensitive, thoughtful, active, smart and extremely social. He loves Pokémon, riding his bicycle, playing video games and reading. He adores his older sister and the two have a very close relationship.

Evan’s doctors, therapists and teachers use different words to describe him: Tuberous Sclerosis, Epilepsy, Retractable Seizures, Cortical Tubers, Angiomyolipmoma, hypomelanotic macules, Processing Disorder, Hemiperesis, Increased Tone, Pronation...

Both descriptions are correct but we strive to provide an upbringing for Evan that will not define him by his disorders. We are well aware of how they impact him on a daily basis, but he is so much more than the sum of his challenges.