Happy Birthday, Drug Study Update, More Clothes, Random Pictures, and a Couple of Fundraisers

Sorry that’s it’s been about a month since my last post. I was waiting until I had enough stuff to post about. I promise I’ll do my best to keep this post a little more organized than the last one. That was messy, and it’s really been bothering me. I’ve gone back to review it a couple of times, but just couldn’t find a way to make it any less of a mess. I even thought about deleting it, but decided to leave it, move on, and try to do better.

 

Happy Birthday Mommy

Let’s start this post by wishing Stacy a Happy Belated Birthday. Her 38th birthday was about three weeks ago, but she’s such an amazing woman and mother to James that she deserves to be celebrated every day of the year. We used the number 8 candle for James’ 8th birthday and it is now retired and put away in James’ memory box, so we had to improvise a bit with candles for Stacy’s cake….six plus two equals eight so we used candles 3, 6, and 2.

 

A decorated cake sits on a countertop, covered in white frosting with chocolate drizzle running down the sides. Small round cookie‑dough pieces are arranged on top. Three lit candles shaped like the numbers 3, 6, and 2 stand together, forming “362.” The cake has a playful, celebratory feel, as if marking a humorous or unconventional milestone.

 

Stacy leans over a kitchen counter, blowing out candles on a small round cake. The cake is frosted in white with chocolate drizzle and topped with small round cookie-dough pieces, and colorful candles. On the counter nearby are a greeting card with balloon illustrations, a red lighter, a stack of papers, and a white mug. Wooden cabinets and a light‑colored floor set the scene, giving the moment the feel of a casual, warm celebration at home.

 

Drug Study Update

Moving onto the other amazing one in the family, James has really been kicking ass in this seizure drug study. Or is it the drug that’s kicking ass? Either way, we’re very pleased at how well this drug study has been going.

We’ve been using the Seizure Tracker app on our phones to keep track of his seizures throughout the day. It’s a really easy app to use and while it allows you to track so many different things, the main ones we are concerned with are the date, the time the seizure happened and the length of the seizure (hours, minutes and seconds), the type of seizure, and any notes about the seizure. When synced with their website, we can export the data into an Excel spreadsheet which makes it easy to fill out the seizure journal we have to keep for the drug study.

The picture below is just a little snippet of that spreadsheet that Stacy modified to show the then and now. A couple of things to note about the spreadsheet… The first column is the date and time of the seizure. The second and third columns are the length of the seizure (minutes and seconds). All of James’ seizures are short and are over in a matter of seconds.

You may also notice that in addition to seizures, we also track “clusters”. Some people consider a cluster as 2 or more seizures within a 24-hour span. For James, a cluster is considered 2 or more seizures in a 5-minute window. So, as an example, in the picture below, James had a seizure at 8:10 pm on August 9th that lasted 4 seconds. He had another 4 second seizure at 8:14 pm. Because both of those seizures happened less than 5 minutes apart, we consider it a cluster. Same thing with the seizures at 8:29 pm and 8:33 pm. That is considered another cluster. I am not sure why Stacy highlighted the 8:44 pm seizure as being part of the 8:29 to 8:33 cluster. Could have just been accidental.

 

A screenshot of a spreadsheet logs seizure activity across several dates. The top section is labeled “AUGUST 9TH 2017” and lists a series of time‑stamped entries, each with columns for values, seizure type, and brief notes. Most entries are marked “Simple Partial,” with some including descriptions like “Fencing with scream.” A highlighted line below summarizes “72 – Simple 1 – Myo.” A large label reads “THE DAY BEFORE THE DRUG TRIAL,” with a blue arrow pointing toward it. Below, two additional dates appear: “10/17/2017,” showing one morning seizure labeled “Simple Partial | Cry,” and “10/18/2017,” listing three similar seizures at different times. Highlighted notes indicate “1 seizure / 0 clusters” for the first date and “3 seizures / 0 clusters” for the second. The layout resembles a medical tracking sheet documenting frequency and characteristics before and after a treatment milestone.
What an improvement!

 

On August 9th, the day before he started taking the drug, James had 72 seizures. Seventy-two seizures in one day! Stacy forgot to input the clusters for August 9th, which was 23. Now here we are just a couple of months later and he is only having 1 to 3 seizures a day an no clusters!

We’re trying to be cautiously optimistic because we’ve down this road before. There have been a few other treatments we have tried that started out reducing his seizures, but for whatever reason, the treatment became ineffective and the seizures came back. We’re hoping that we’ve finally found something that will knock these seizures out for good, but we’re also hoping that we don’t get let down…again.

It has been a bit of a pain in the ass to drive into the city every couple of weeks to meet with the neurologist, but the results are so worth it. Stacy will probably tell you that the worst part of the appointments is waiting for them to bring up a new batch of meds. Stacy took this selfie of her and James a couple of weeks ago while we were waiting for over an hour for the meds to come up so we could go home.

 

James and Stacy sit close together indoors. James is seated in a supportive wheelchair, wearing a white shirt and a striped neck pillow. Beside him, Stacy in a dark blue hoodie leans in, her head close to the James'. Behind them is a wooden door, a wall‑mounted dispenser, and a posted sheet of paper.
Waiting for the meds is the hardest (and longest) part of the appointments

 

Clothes

As if James doesn’t have enough shirts, we’ve added a couple of more to his collection. This first one was a gift, and it’s awesome. With all of the newspaper articles written about him, his Facebook fans, and the readers of this blog, he’s become a little bit famous. It’s a bit funny sometimes when you’re talking to someone who you never met and James comes up in the conversation, and they respond with, “oh, you’re James’ mom?” or “you’re James’ dad.” Yes, this has really happened!

 

James is lying down on a surface with a colorful pillow decorated with cartoon animals and a striped blanket underneath. He is wearing a gray T‑shirt with blue text and a small sunglasses graphic. The shirt reads: “Local Celebrity… No autographs please.” The scene has a relaxed, playful tone, with the humor on the shirt adding a light, cheeky touch.
Local celebrity…No autographs please

 

The second shirt is the one that we ordered from Pediatric Stroke Warriors with James’ name on the back.

 

A purple shirt with bold white and light‑purple text reads “WARRIOR STRONG,” with “PEDIATRICSTROKEWARRIORS.ORG” printed underneath. Below the shirt is a purple panel filled with many names in white text, each followed by a number in parentheses. A hand wearing a ring points directly to the name “JAMES F. (8).” The overall scene feels like a tribute piece honoring children in a pediatric‑stroke community, with the pointing gesture highlighting one name with personal significance.
Pediatric Stroke Warriors shirt with James’ name on the back

 

Friday, October 6th was World Cerebral Palsy Day, so we all wore green, which is the designated color for cerebral palsy awareness. I had already left for work so I wasn’t in the pic, but I was wearing green, I swear.

 

James and Stacy lie on a carpeted floor indoors. James rests on patterned pillows, wearing a green shirt with white text that includes “Athletes” and “Special Olympics Illinois.” Beside him, Stacy in a lime light green shirt smiles warmly at the camera. A blanket is visible in the background. The moment feels relaxed and affectionate, capturing quiet companionship and shared comfort.
Wearing green for World Cerebral Palsy Day

 

The final clothing item on my list is to give a shout out to Target for starting to sell adaptive clothes for kids with disabilities. We wish these were around when James was younger. We would have bought a few of the onesies with g-tube access. Stacy is thinking about buying an adaptive coat for James to tryout this winter. Here’s a link to all of the Cat and Jack adaptive items they sell:

https://www.target.com/s?searchTerm=cat+and+jack+adaptive

 

Just Some Random Pictures

I couldn’t figure out a way to incorporate these pictures into this post so I’m just going to throw them here. No words. Just pictures.

 

Stacy and James lie on a carpeted floor, smiling. A playful digital filter adds glasses, cat ears and a small cat nose to their faces. James rests on a pillow with colorful cartoon animal prints, wearing a green shirt with a Special Olympics logo. Stacy lies close beside him, also smiling, creating a relaxed, lighthearted moment together.

 

A quiet backyard is viewed from beneath a covered patio. A wooden support post stands on a concrete slab in the foreground. Beyond it, a grassy lawn is scattered with fallen leaves, bordered by several leafy green trees and bushes. A small beige shed with white trim and a brown roof sits near the back fence. Neighboring houses are partially visible through a chain‑link fence. The scene feels peaceful, like a mild, sunny day in a residential yard.

 

Fundraisers

A few weeks ago Stacy and James met another special needs mom and her daughter (aka James’ girlfriend) at a softball game fundraiser between the police department and fire department. He was able to squeeze in a little bit of belly time before the game.

 

A grassy sports field stretches out under a clear blue sky. In the foreground, James is lying on the grass on top of a towel and a colorful blanket, only partially visible. A stroller sits nearby. In the distance, several people stand and talk near a softball field, some dressed in athletic clothing. The scene feels relaxed and summery, like a casual moment during an outdoor sporting event.
Belly time before the softball game

 

Two softball teams stand on the field near home plate, lined up facing each other. One team wears dark blue uniforms and the other wears red. The infield dirt and green outfield grass are clearly visible, bordered by a chain‑link fence with a yellow safety guard along the top. A large protective backstop rises behind home plate, and tall light poles surround the field. The moment feels organized and respectful, as if taking place before or after a game during a brief ceremonial pause.
Softball game fundraiser: Police Department vs Fire Department

 

As I end this post, I need to ask for a bit of a favor. A lot of you have been quite generous in helping us out over the years, so I’m a bit hesitant to ask more from you. We recently found out that one of our favorite nurses when James was in the NICU has had a bit of a rough year with her own medical issues. She had emergency open heart surgery almost a year ago and was out of work for about four months while she recovered. She recently underwent another emergency surgery to replace the ring that they put around mitral valve during the first surgery that had come undone. She will likely be out of work again for another few months as she recovers. A fundraiser has been setup to help her with medical bills and other expenses while she is out of work. I know it’s a big ask, but if you can help out in any way, we would appreciate it. As a NICU nurse, she helps keep the smallest and weakest of babies alive. She deserves all the help she can get. Thank you.

https://www.freefunder.com/campaign/sarahs-heart