School, Oral Surgery Update, and Mother’s Day

  • Post category:Holidays / School
  • Reading time:6 mins read

School

It was another busy month at school for our little man. Towards the end of April, James and his classmates baked and dropped off treats for the staff at school district administrative office.

 

Six people gather in an office space, with three seated in wheelchairs at the front and three standing behind them. One of the standing staff members holds a colorful “Thank You!” sign. The wheelchairs have trays and assistive devices, including a drawing of a yellow school bus on one tray. Behind the group is a door labeled “Boardroom,” a framed black‑and‑white artwork, and a large map on the wall. The scene feels like a moment of appreciation and togetherness in a supportive community setting.
Dropping of treats for the school district administrative staff

 

On May 1st they went on a field trip to the zoo:

 

People move along a paved walkway toward the Brookfield Zoo entrance, where a large sign features a tiger perched on top and colorful jungle‑themed decorations. Some of the visitors use wheelchairs and mobility aids as they head toward the gate. Tall green trees frame the scene, and the sky is clear and sunny, giving the moment the feel of an accessible group outing on a warm day.

 

A close up of James sitting under a red umbrella, wearing blue sunglasses and a bib with a red‑and‑white Cat in the Hat pattern. A person stands in front of him off frame. One of their hands holds James' left hand; their other hand touches a bronze statue of what appears to be a wolf or a coyote. Another bronze statue of the same animal stands in the background.

 

James sits in his wheelchair under a bright red umbrella, wearing blue sunglasses, a denim hat, and a bib with a red‑and‑white Cat in the Hat pattern. His chair’s headrest and communication switch are visible. In the background, an outdoor zoo enclosure stretches behind him, with a rocky wall and grassy area where a large white animal rests. The moment feels like a shaded pause during a warm‑weather zoo visit.

 

A gorilla rests inside its enclosure, lying back against a beige hammock‑like support. A large artificial tree branch runs across the foreground, secured with a metal strap. The surrounding habitat is made of textured rock walls and a dirt floor, giving the scene a quiet, sheltered feel as the gorilla relaxes in the space.

 

On May 3rd he got hit in the face with a dodgeball in gym class. Fortunately, it looked like his glasses took the majority of the impact. His glasses then proceeded to leave a cut on his nose. And it was prom night of all nights! It was a small gash, and you can’t really notice it in any of the prom pictures.

Last week they went on another field trip to an outdoor recreation center that is part of our suburban special education organization. I was a little freaked out when Stacy texted me one of the pictures James’ nurse had sent to her. He was on a boat! I called Stacy after I saw the picture and asked if she knew that he was going to be on a boat or if she had to sign a waiver saying that it was okay, and she said no. I voiced my concerns with her, mainly that if anything were to happen and he wound up in the water, he’d be dead. Fortunately, everything was fine, but Stacy did have a talk with the teacher who expressed how sorry she was and that if they do something of that nature again, they will ask for approval beforehand.

In addition to going on a boat for the first time, James also learned archery, which you will see in the photos and video below.

 

James and another person sit together in a small metal rowboat on a calm lake surrounded by green trees. James is wearing a neon green hoodie and orange sunglasses, while the other is dressed in a gray shirt and jeans. Both wear bright orange life jackets. The water is still and the scene feels like a quiet, pleasant moment during an outdoor boating trip.
First time on a boat

 

An outdoor archery setup sits on a grassy area surrounded by trees. In the foreground, James sits in a wheelchair wearing a bright green outfit and orange sunglasses and is positioned at a table with a mounted adaptive bow system. Another person stands beside him, helping guide or adjust the equipment. In the background, a large archery target with blue, red, and yellow rings sits on the grass, and a curtain‑style backdrop displays several colorful circular targets in a row. The scene feels like a supportive, accessible archery activity on a warm day.
Learning archery

 

 

When I got home from work on Friday, I went to tell James that Daddy was home like I always do and noticed that his hair was styled vastly different than normal. As I kneeled down to give him a kiss on the forehead, I touched his hair, and it was stiff as a board! I asked Stacy what the hell happened to his hair and she said that they had spa day at school. They also gave him a shave. Not really. They pretended that they were shaving him. One of these days I will have to give him a real shave, but I’m just not ready yet. I know once I start, I’ll have to keep up with it. As fast as this kid’s hair grows, if I wait too long between shaves, he’ll probably have a full beard.

 

James sits wrapped in a white towel in a caregiving setting. His mouth is open slightly, and a white cream is applied around his nose and upper lip. His short brown hair is damp, and the background shows counters and equipment typical of a home‑care or medical environment. The moment feels like part of a routine personal‑care task.
Getting a shave

 

James sits in his wheelchair wearing a black‑and‑white checkered shirt and a neck support decorated with colorful bicycles. His hair is styled upward in gelled spikes, giving him a playful, expressive look. Behind him is a wooden door with a poster, a wall‑mounted sanitizer dispenser, and a trash bin near a sink. In the background, another student sits at a desk in a classroom filled with bulletin boards and educational materials. The scene feels like an ordinary school day with a touch of fun through James’s bold hairstyle.
A new hairstyle

 

 

Oral Surgery Update

It’s been a couple of months since I provided an update on James’ potential oral surgery. After our last appointment at the UIC Craniofacial Center in February, Stacy and I were bit overwhelmed with the surgical plan that the doctors laid out for us: some shaving of the tissue on the upper palate; removing a few teeth; cutting the lower mandible (jawbone) down the middle; and inserting a custom-made expander on the lower jaw that we would need to crank every so often to widen the jaw. And they also mentioned the “t” word. One of the doctors told us that they may have to put a trach in during surgery.

All we want is for them to create a little bit more room in his lower jaw so that his tongue can lay flat…and maybe allow him to close his mouth a little bit. The surgery they proposed seemed a bit invasive, and we’ve spent the past couple of months questioning if we wanted to put James through it. He’s been through a lot of surgeries and rocked them all, but this oral surgery has made us really apprehensive. I think we’re more nervous about this surgery than we were about any of his other surgeries, including the full spinal fusion where they cut his back open from the bottom of his neck all the way down to his tailbone.

James had a dental appointment a couple of weeks ago and Stacy asked the dentist to do a write up of which teeth she feels would be okay to take out. Stacy sent those notes down to the doctors at UIC, and we’re waiting to hear back. We have another appointment with them next month so maybe we will discuss it then. Part of me is hoping that they say something like, “you know, if we remove those teeth, that just might provide enough room for his tongue.” I know that probably won’t happen, but it would take a lot of weight off of our shoulders. We just want to do what’s best for James, but do we really need to put him through this? Is there something else we can do instead that doesn’t seem so invasive?

 

 

Mother’s Day

On a lighter note, on Sunday we celebrated the best mother that I have ever had the privilege of knowing…other than my own of course. I wanted to do something a little different for Stacy this year and not just make her a nice breakfast or buy her flowers. Well, I guess I did kind of buy her flowers, but not the kind you’d find at your local florist. I remembered how much fun James and I had putting together a Lego Wonder Woman for Stacy many years ago, and thought we should do that again. I found a Lego kit on Amazon that gave us a choice of three things we could build: birds on a perch, a watering can with flowers, or a boot with flowers.

 

Three small LEGO builds are shown in separate sections. At the top, two colorful brick parrots sit side by side with tiny flower pieces nearby. In the lower left, a yellow LEGO watering can overflows with bright flowers and green leaves. In the lower right, a yellow LEGO boot has flowers sprouting from the top. Each build sits in a pastel room with plants and soft sunlight. Text at the bottom notes that all three designs come in one box.

 

We decided to build the boot with the flowers. Looked easy enough to make. I figured that James we could do in less than an hour. I was way off! I think it took us over two hours to put that thing together. And it really wasn’t that big.

 

James sits in his wheelchair wearing orange sunglasses, a green shirt, and a neck pillow decorated with colorful bicycles. A harness supports his posture. In the foreground, a hand holds a small yellow boot‑shaped toy with bright plastic flowers attached, positioned near his chest as if being shown to him. The background includes a carpeted floor, a doorway, and household items like baskets and bags. The moment feels like a simple, engaged interaction in a familiar home setting.
Lego flowers for Mommy for Mother’s Day

 

Thank you, Stacy, for everything you do for James. He is extremely lucky to have you as his mom.