Drug Study, Mini Vacation, and Fundraiser Reminder

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.

 

James sits near a large window overlooking a cluster of multi‑story buildings, including a parking structure and taller office‑style buildings. A construction crane rises in the distance, and trees line the lower level of the view. Inside the room, brown chairs are arranged along the window, and a dark bag with “Proud Mom” printed on it rests nearby.
Enjoying the view while we wait for the neurologist

 

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?”

 

A gray duffel bag with black straps sits on top of a turquoise bag with gray accents. The duffel’s front pocket has an embroidered green turtle and the words “Jimmy’s Bag.” Nearby are other packed items, including a black‑and‑white patterned bag and a piece of medical equipment. The scene looks like neatly arranged luggage, possibly in the back of a vehicle, with a mix of personal and medical gear prepared for a trip.
James’ new Thirty-One duffle bag

 

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:

 

A lakeside clearing is framed by two tall trees in the foreground. Between them, rows of outdoor chairs sit on the grass facing the water, as if arranged for quiet relaxation or a small gathering. Beyond the chairs, two docks extend into a calm lake — one with a pontoon boat tied to it, the other with a few people standing near the end. The far shoreline is lined with trees, and the sky above is partly cloudy with soft patches of blue, giving the whole scene a peaceful, inviting feel.
Lake Delevan

 

Stacy pushes James in a wheelchair down a long carpeted hallway lined with large windows on both sides. Stacy wears a gray shirt and a colorful patterned backpack. Sunlight streams through the windows, creating bright patches across the blue patterned carpet. The hallway has brick walls, wooden framing, and views of greenery and water outside, giving the scene a calm, scenic atmosphere as they move together through the space.
On our way to get some food

 

Stacy and James are outside on a grassy area near a building with balconies. James sits in a wheelchair with a striped neck cushion, his mouth slightly open. Stacy leans in close beside him, hands clasped near her face, looking toward the camera. A child walks across the grass in the background, and a lamp post and trees line a paved path, giving the scene a calm, lodging‑area feel.
Enjoying the beautiful weather

 

A vintage red fire truck is parked on a paved area with grass and trees behind it. The side of the truck is lined with hoses, gauges, and metal compartments, and the driver’s door features a fire‑department emblem along with the words “Lake Lawn Fire Prevention.” Toward the back, additional lettering promotes the Lake Lawn Resort with a list of amenities. Two American flags are mounted on the rear, giving the truck a festive, display‑ready look.
Old Lake Lawn fire truck

 

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.

 

Jeff sits on a couch with a red backrest holding James in his lap. Jeff, wearing a white T‑shirt, leans over James in a protective, affectionate way. James rests on a yellow pillow and wears a red outfit featuring a cartoon character and playful text. The overall moment feels calm and intimate, capturing a soft pause in the day.
Waiting our turn for the TV

 

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

 

A gray T‑shirt features a printed design that looks like a sheet of lined notebook paper, complete with blue horizontal lines and a red vertical margin line on the left. Centered on the design is the phrase “STORY IN THE MAKING” in bold lettering. Near the top left, a small blue label‑style detail includes the Thirty-One brand name. The overall look is playful and creative, echoing the idea of a blank page ready for someone’s story to unfold.
Story in the Making

 

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