Epilepsy Awareness, Drug Study Update, and School

As I sit down to write this post, I realize that we’re in the middle of November. Six weeks from now it will be Christmas, and a week after that we will be starting a new year. Where did this year go? It’s weird how time works sometimes. There are days and weeks that seem longer than normal; other times you look at the calendar and wonder where the year went.

 

Epilepsy Awareness Month

Those of you who are following James on Facebook should be aware that November is Epilepsy Awareness Month. As she has for the past several years, Stacy has been posting daily epilepsy facts there. I will do what I normally do and create two Epilepsy Awareness posts. The first will be posted on Wednesday and include the first 15 days of the month; the second I will plan to post on the 30th which will include days 15-30.

Stacy is having an Epilepsy Awareness fundraiser where a portion of the commissions Stacy makes from sales in her online Thirty-One party will be donated to the Epilepsy Foundation of Greater Chicago. With Christmas creeping up fast, it’s a good opportunity to get some shopping done, and help an amazing organization at the same time. The party is only open until November 20th. If you would rather donate directly to the Epilepsy Foundation of Greater Chicago directly, you can do so here:

How To Give

You can even donate in honor of James if you want.

 

Drug Study Update

Stacy posted an image quote on her Facebook page last week that says:

“You learn just how long 30 seconds really is when you are watching someone you love have a seizure.”

This is a very true statement. James’ seizures are shorter than 30 seconds—typically in the 5 to 10 second range—but even 10 seconds seems like a long time while you’re watching your kid seize and not be able to do anything about it.

Fortunately, I think we finally found a drug that works. Going from 50 to 100 of those 5 to 10 second seizures every day to just a handful is HUGE! He’s averaging around five seizures a day now…and some days we haven’t counted a single one.

I will continue to complain about driving into the city every couple of weeks to meet with James’ neurologist who is running the study, especially when we have to leave the house at 6:30 am, but it’s totally worth it for this dude:

 

Stacy and James sit inside a vehicle. Both wear large sunglasses. Stacy on the left has dark hair pulled back and wears a dark blue shirt with partially visible white text. James on the right has short hair, a striped neck pillow in red, white, black and gray, and a dark jacket. The car’s interior, including the rear window and seats, fills the background. The moment feels casual and relaxed, like a snapshot taken during a ride.
On our way to the neuro for a drug study appointment

 

School

James’ 3rd grade school photos arrived and it looks like he’s gained a little bit of weight:

 

A formal school portrait shows James seated in a wheelchair, wearing a green plaid shirt. The background is filled with autumn foliage in warm shades of red, orange, and yellow. Text in the lower left corner reads “James 3rd Grade 2017–18.” The image has the polished, posed feel of a traditional school photo, with a seasonal backdrop and a calm, centered expression.
3rd grade school photo

 

I know they say that the camera adds like 10 pounds, but this is crazy! Seriously, though, it’s the TLSO/back brace that he wears that makes him look much bigger than he actually is. I think we may need to buy some larger shirts that fit over the TLSO better.

Here are his school photos over the years, starting with the first year of preschool on top, then the second year of preschool, first grade, second grade, and now third grade:

 

A wall display features a grid of framed photographs. Most of the photos show James in a wheelchair wearing different plaid shirts, captured in both indoor and outdoor settings. In the upper right area, one frame shows a pair of adult hands holding a small stuffed monkey against a plain background. Above that section, large decorative letters hang on the wall, including a red “J” and a gray “A.” The arrangement feels personal and intentional, like a family gallery honoring different moments across James' life.
All of James’ school photos so far

 

When I got home from work one night a few weeks ago, I noticed this sitting on the kitchen counter:

 

A printed “Menards Scavenger Hunt” sheet shows a 3×4 grid of illustrated items, each with a label underneath. Some items are crossed out with colored lines. The top row includes holiday trees, pumpkins, wood, and Halloween lights. The middle row shows hay, tools, scarecrows, and costumes. The bottom row includes furniture, spiders, paint, and candy. The layout looks like a simple visual checklist for finding items around a store.
They went on a scavenger hunt at Menards

 

I knew that James had a fieldtrip to Menards (a home improvement store chain in the Midwest, similar to Home Depot or Lowes) and questioned what they planned to do on this fieldtrip. Just seemed like an odd place to take a bunch of third graders. I now know that they had a scavenger hunt around the store, but now I have another question. Were they supposed to find real spiders or fake spiders like those you would use for Halloween decorations?