4th of July, Drug Study, and Some Randomness

  • Post category:EEG / Epilepsy / Holidays
  • Reading time:5 mins read

4th of July

After having a bit of a lull for a month with not much going on, these past couple of weeks were a little bit busier, starting with going to a 4th of July parade in a neighboring town. James doesn’t regulate his body temperature like most of us can, so we do our best to keep him cool when it’s hot outside. We have an umbrella that clamps onto his wheelchair that seemed to help a bit.

 

James sits in a wheelchair outdoors, shaded by a red umbrella positioned above the seat. He wears a blue Chicago Cubs shirt, red shorts, blue sunglasses, and a striped neck pillow in red, black, and white. A black harness secures him in place, and an orange wristband is visible on one arm. Behind them is a tan fabric structure.
Trying our best to keep the sun off of him

 

We only stayed for about half of the parade before we decided to head home and get James back in the cool air conditioning. We think James enjoyed the parade. The only part that he didn’t seem to care for (other than the heat) was the wailing firetrucks. I think the loud sirens hurt his sensitive ears. He seemed to enjoy the bands and colorful floats, though.

 

A parade moves down a sunny suburban street as spectators — kids and adults — watch from the sidewalk. A police officer in a bright yellow vest stands in the foreground near the crowd. Marching in the parade are participants dressed in colonial‑style uniforms carrying a banner that reads “Patriot’s Marching Band.” Behind them, performers in red and white dresses wave American‑flag‑patterned flags, and one person carries a large American flag at the front. The scene feels festive, patriotic, and full of community spirit.
4th of July parade

 

The following day, James’ class had their own 4th of July parade at school.

 

Outside a brick building, James in a wheelchair is pushed along a sidewalk by his nurse. James wears a red visor, sunglasses, a gray shirt, red shorts, and red socks, and the wheelchair is decorated with colorful items including a pinwheel and small ornaments. His nurse behind him wears sunglasses, a red shirt, patterned pants, and sandals. Sunlight hits the scene, giving it a cheerful, celebratory feel.
All decked out for their 4th of July parade at school

 

Seizure Drug Study

Last week we went down to Rush to get all of the preliminary testing done before James starts a drug study for a seizure medication. Long ass day! Left the house at 7 am, got to the hospital at 7:45, EEG for his brain, EKG for his heart, bloodwork, and we finally left the hospital at 2:30. Poor kid was zonked by the time we left.

 

James lies in a hospital bed covered in white sheets, with EEG wires attached to his head and leading toward equipment out of frame. Beside the bed, Stacy sits close, wearing a gray shirt and leaning in with a steady, attentive posture. Behind the bed, cables and wall‑mounted equipment add to the clinical feel of the room. The scene captures a calm, tender moment of someone keeping watch in a hospital environment.
Can you spot James? Hint: He’s in the bed with a bunch of EEG wires coming out of the back of his head.

 

James sits in a wheelchair wearing blue sunglasses and a striped neck pillow in black, white, and red. His mouth is open slightly, and their head rests against a black headrest. He's dressed in a shirt patterned with hamburgers. Behind him, parts of a car interior are visible, including a seatbelt and a red car seat, giving the scene the feel of a relaxed moment during a ride.
Tired after a day of testing

 

Assuming everything checks out, we’ll be heading back to hospital in August to pick up the medication and officially start the trial. I won’t mention what the drug is because I don’t know if there is anything in the fine print that says we can’t talk about the drug. Does anybody read those things anyway?

I also think that I am going to go back, look over all of the previous posts and remove any mention of which drugs James is on. I am not here to promote, bad mouth, or advertise any medications. Besides, medications affect people in different ways. Just because a medication didn’t work for James, I don’t want people to think that it won’t work for their child. The opposite is also true…if a particular med did work for James, there is no guarantee that it will work for your child.

With that being said, I will say that the drug that James will be starting next month is currently only approved for children and adults age 12 and older. This study is to test the drug in children under 12 years old.

One of the things we’ll have to do during the course of the study is to keep a journal of James’ seizures. We haven’t looked too much yet, but we’re hoping to find some sort of phone app that will allow us to track the seizures.

 

Time is Precious

We’re really hoping this drug works for James. The kid needs relief from these seizures. His parents need some relief, too! Watching him suffer all of these years really takes its toll on you. Some of the medications and treatments that he has been on have provided some relief, but oftentimes it was short-lived, and the seizures came right back. Fortunately, James is non-ambulatory so at least we don’t have to worry about him hurting himself during a seizure. Others are not so lucky. A couple of weeks ago, the son of one of Stacy’s friends fell during a seizure and had internal bleeding. Fortunately, it sounds like he is going to be okay, but it could have been a lot worse.

There is always the chance of James having SUDEP (sudden unexpected death in epilepsy) take him away from us. Either that, or pneumonia. We don’t know how much time James has left. Being a part of the special needs community, we’re constantly reminded of how fragile life is and how precious time is. We go from day to day thinking that there will always be a tomorrow. Most of the time we don’t know when that tomorrow won’t come. Other times we do. Another special needs mom that Stacy knows is preparing to say goodbye to her daughter. She was a fighter, but her body is getting tired and is ready to get some rest. I am not going to mention their names for privacy reasons, but please say a prayer tonight for all the kids around the world (and their families) who are suffering from whatever medical condition they may have. And remember to kiss your own kids goodnight every night. You just never know if their tomorrow won’t come.

 

Randomness

I can’t end a post on a sad note so let’s add some humor and good things.

About a week ago, James got a delivery of medical supplies and formula. I opened a case of formula to put away and this is what I found. I have OCD. Can you tell me what is wrong with this picture?

 

A cardboard box is filled with small rectangular cartons arranged in tidy rows. Most of the cartons have a red‑and‑silver design with the words “Peppermint Junior 15” and a white “SHAKE WELL” label on the side. Printed date codes appear on each carton. Near the top of the box, one carton is flipped upside down, making it visually stand out from the rest.
Something isn’t right here

 

 

James got a metal for completing Special Olympics Day at school last week:

 

James sits in a wheelchair inside a home, wearing a black shirt with a white graphic, red pants, and matching red arm braces. A striped neck pillow rests around his neck, and a medal on a red and silver ribbon hangs across his chest. The hallway behind them shows rugs on the floor, shoes near a doorway, and a small table with a basket of household items, giving the scene a warm, everyday home setting with a hint of celebration or accomplishment.
Special Olympics medal

 

A silver medal hangs from a red‑and‑silver ribbon, resting against a black shirt printed with the words “Agent 007 James Fulkerson” in white. The medal features the Special Olympics logo along with engraved text and includes a small red glow stick attached to the ribbon. The close framing highlights the medal’s reflective surface and the sense of achievement it represents.
Special Olympics medal

 

 

Our township has a wonderful Disability Services department that puts on several events for those in the community with disabilities. They had a picnic on Saturday with games that followed the “Under the Sea” theme. James caught himself a fish cookie. Since he was unable to eat it, he let mommy and daddy split it.

 

James sits in his wheelchair outdoors, wearing a red visor with a blue star‑patterned band, blue sunglasses, and a yellow shirt with a printed design. A striped neck pillow rests around his neck, and the chair includes a headrest, and visible medical tubing. They hold a small clear bag tied with twine containing a decorated cookie shaped like a fish along with a green paper cutout. In the background are grass, a blue tablecloth, and people seated under a canopy, giving the scene a cheerful outdoor‑event atmosphere.
James with his fish cookie that he caught