Drug Study

If there was one thing about James that we could fix, I think Stacy and I would both agree that it would be the seizures. He has been having seizures since day 1. Actually, Stacy suspects that he might have had his first seizure prior to being born. He was fairly chill throughout most of the pregnancy. The ultrasound tech often had a difficult time coaxing him into the right position so that she could get the measurements that she needed. Stacy never felt him kick like some expecting mothers do. Then one day towards the end of the pregnancy, she felt him kicking like crazy. It wasn’t until after he was born, and he started having seizures in the NICU that we started to suspect that maybe he wasn’t kicking at all. What felt like kicks at the time might have been James having a seizure.

For the past 7 (almost 8) years we’ve been dealing with the seizures. We’ve tried countless treatments and medications hoping that we would eventually find the one that would “cure” him. I put cure in quotes because I don’t think anyone is ever really cured of epilepsy. As hard as it is sometimes, we haven’t given up hope that we’ll find something that will at least lessen James’ seizures.

Last Thursday (August 10th), James started taking a new seizure medication as part of a drug study. I should clarify that the drug is not new; it’s just new to him. The drug has been approved for use in children and adults 12-years-old and older. This study is to test it in kids under 12.

For the study, we have to keep track of James’ seizure clusters. If you do a Google search for “seizure cluster”, a lot of sites say that a cluster is 2 or more seizures within 24 hours. For James, we consider a cluster as 2 or more seizures within a 10-minute window. We knew ahead of time that we were going to need to keep track of his seizures and clusters for the study, so we’ve actually been counting them since July 1st.

We’ve found a cool app for our phones called “Seizure Tracker” that makes it a bit easier for us to keep track of them. We set up an account and Stacy and I have the app on our phones so that when one of us tracks a seizure on our phone, the other one can see it on theirs. There is a lot of stuff that you can keep track of in the app, such as time of the seizures, the length, any triggers that may have caused the seizure, etc. For us, we’re primarily concerned with the time that it happened, and the length of it. We haven’t started calculating the clusters yet, but I can tell you that since July 1st James has anywhere from 30 to 76 seizures per day. Imagine watching your kid having that many seizures every day and not being able to do anything about it.

We’d be happy if this drug will just cut those numbers in half. We’re trying not get our hopes up, though, because we’ve been down this road so many times, and each time we’ve been let down. We will meet with the neurologist again next week to see how James is doing so far and if there has been any improvement in the seizures.

Mini Vacation

It felt like we had just gotten back from our trip to Ohio for the Thirty-one conference when we were packing up to take another short trip. There was about a week in between, but still. Every year we get together with my mom’s side of the family at Lake Lawn in Delavan, Wisconsin. It’s a tradition my grandparents started a long, long time ago. We used to go up there for Easter weekend, but with some of the kids now off at college, it became harder for everyone to make it. Now we pick a time over the summer when schedules are less hectic.

I had to question Stacy’s thought process when I saw James’ new Thirty-One duffle bag. “A turtle? Because James is slow?”

She told me that she picked the turtle because she thought it was cute and because she refers to his TLSO as a turtle shell. That makes more sense.

Here are a few pics from our trip:

Fundraiser Reminder

The James and the Chocolate Factory walk is less than a month way. If you’re local to the Chicago area, please consider coming out. Even though this fundraiser benefits us, we want the first event of the Acts of Random Kindness (ARK) club to be a successful one. The two students that started the club did so because they were inspired by us. We are actually inspired by them and all of the dedication and hard work they’ve put into this.

If you are free on September 10th, come and join us for a walk around the beautiful Elmhurst College campus. You can either walk alone, start your own team, or join the Fans of James team. More information can be found at the following links:

Team Page: http://jameswalk.com/participant/586205

Register here: www.jameswalk.com/3/fundraiser.htm

Be a Participant: www.jameswalk.com

I realize that I don’t post too many pictures of me so I will end this post with pic of me with James. Stacy was using the TV to workout, so we were just chilling on the couch waiting for our turn to watch cartoons.

Okay, one more picture. This is a shirt that Stacy bought for James at the Thirty-One conference a couple of weeks ago:

He is a story in the making, and it’s a story that must be told.