Spinal Fusion Update, 4th of July, Special Olympics, and a Mini Vacation

Hello August. How are you? I’m doing fine, thanks for asking…

Am I the only one that replies with ‘fine’ when someone asks how you are? Even when I’m not fine, I still say that I am. I guess it’s just easier than providing another answer that may require a longer conversation. You can’t exactly reply with ‘pretty crappy’ or ‘sad’ or ‘depressed’ or even just ‘worn out’ and leave it at that. The other person would probably want further details. I know I would. Even if it was someone I didn’t know well. But we just don’t seem to have time for that anymore. We all seem to be in a hurry to get somewhere and don’t have the time to stop and talk to someone. Or maybe we don’t want to burden others with our problems. So, we resort to telling others that we’re fine even if we’re not. It’s sad really. I wonder how different the world would be, or our lives would be, if we would just tell people how we are actually feeling when we are asked ‘how are you’.

No idea where that came from or where I was going with it. I just wrote the first thing that came to my mind—”hello August”—when I sat down to write this post and just let the words kind of spill out. How am I really doing? Today I’m good. We got back a couple of days ago from a little mini vacation, which is always a nice break from reality. Last week I was not so good after we got some news about James’ spinal fusion surgery. More on that below. I guess my mood depends on the day, same as every one else.

 

Spinal Fusion Update

I don’t want to keep you in suspense, so I’ll start with an update to James’ spinal fusion. Unfortunately, we had to cancel the surgery that was scheduled for July 25th. Our health insurance company denied the surgery on the 18th because the curvature of his spine is “not severe enough to meet criteria for this procedure”. The curvature is currently at 59 degrees, but insurance won’t cover the surgery unless it is at 70 degrees or more.

The insurance company setup a peer-to-peer phone call with the doctor on the 20th, but the doctor was unavailable to hop on the call at the scheduled time. The doctor called them at his next availability, but the people he needed to speak to were unavailable when he called. The doc has started the ball rolling on the appeals process in hopes that they will reverse their decision and James can get the spinal fusion. The information we received from the insurance company says that an appeal can take up to a month to resolve.

Stacy and I have talked and have decided that even if they reverse their decision and approve the surgery, that we’ll hold off on it for now and plan to have the surgery next June. That way he’ll have 3 months off to recover before school starts up in the fall. If we were to do the surgery now, who knows how long the recovery time will be, how much school he would miss, and therapies, too. For now we plan on getting a new TLSO and see the doc again in four to six months. This will also give us more time to collect more data and x-rays on how the curvature of his spine is doing. Is it staying the same or is it getting worse?

 

4th of July

It was kind of nice having the 4th of July smack dab in the middle of the week this year. I worked Monday and Tuesday, was off on Wednesday for the 4th, and then worked Thursday and Friday. I wish every week could be like that.

Stacy and James went to a parade with a friend and her special needs daughter. They didn’t stay too long, though. We were under a heat advisory and it was a bit too hot for them. James has a hard time regulating his body temperature and even with an umbrella and two small fans, he just couldn’t cool down.

 

James sits outside in a specialized wheelchair on a grassy area near a sidewalk. The chair is outfitted with comfort and cooling accessories, including two small fans positioned near his legs, a colorful neck pillow, and a large umbrella mounted to provide shade. James wears sunglasses, a white shirt, red shorts, and white socks. In the background, a few people stand on the grass near parked cars, with trees and houses visible, giving the scene a relaxed neighborhood feel.
Trying to keep cool at the parade

 

Play Date

We really appreciate it when someone makes an effort to come over and hang out with James. We want him to feel included, but sometimes it’s hard to take him places or to someone’s house. We can’t just hop in the car and go. We have to put him in his wheelchair, grab all of his equipment, and make sure we have his feeding supplies and meds. Weather plays a factor too, as does his mood.

A few weeks ago a friend of Stacy’s and her kids came over on a Friday afternoon to see Stacy and James and watch a movie. They even brought James a dog stuffed animal. Thank you for taking time out of your lives to be a part of James’. We appreciate it, and I’m sure he appreciates it, too.

 

James lies on a cushioned surface with a white towel under his head. Beside him, someone holds a large stuffed dog wearing sunglasses and a gray T‑shirt printed with a blue octopus and the words “HUG MONSTER LIFE IS GOOD.” The stuffed dog is positioned as if it’s being shown to James, adding a playful, comforting touch. Furniture and soft indoor lighting in the background suggest a relaxed home setting.
Some friends came over for a play date and brought James a stuffed animal

 

Special Olympics

James had a Special Olympic Motor Activities Training Day at school in mid-July that Stacy unfortunately was not able to attend because of her work schedule. Thankfully a friend was there and took a couple of pictures of James. Stacy took pictures of his award and medal after he got home.

 

James and his nurse are in front of a bright red backdrop patterned with repeating white “Special Olympics Illinois” logos. James sits in a wheelchair holding a certificate that reads “Special Olympics Illinois Young Athletes Training Challenge Day.” Behind them, his nurse stands with her hands on the wheelchair handles, smiling and present. The scene has the feel of an award moment — proud, supportive, and celebratory.
James after he received his award at the Special Olympics Motor Activities Training Day

 

James is lying down and holding a certificate decorated with red and black stars and swirling accents. The certificate is from Special Olympics Illinois and recognizes James for outstanding performance in the 2018 Motor Activities Training Challenge Day. Signatures appear along the bottom. The scene feels proud and celebratory, highlighting a meaningful achievement.
The award that he received at the Special Olympics Motor Activities Training Day

 

James is wearing a gray T‑shirt printed to look like a sheet of lined notebook paper with the words “STORY IN THE MAKING” across the front and “Thirty‑one” written in cursive near the top corner. Around his neck hangs a red ribbon holding a gold medal, its embossed details visible but not fully sharp. The overall scene feels proud and upbeat, capturing a moment of recognition and accomplishment.
The medal that James received at the Special Olympics Motor Activities Training Day

 

Why So Sad?

On July 8th, James had one of his crying fits. He was very upset about something and Stacy couldn’t figure out what it was. It’s hard when your kid is non-verbal, and they can’t tell you what’s wrong. This must have gone on for a good hour before he finally calmed down.

The following weekend he had another one of his crying spells. This time Stacy wasn’t home. She was out walking dogs, so it was my turn to try to figure it out. I tried to comfort him and talk to him, but nothing I did seemed to calm him down. I laid on the floor next to him and didn’t really care for the cartoon he was watching so I went through the TV guide and saw that M*A*S*H was on. I couldn’t remember the last time I had watched M*A*S*H so I flipped it on. I kid you not, as soon as I put it on he stopped crying! Was there something about the cartoons that he didn’t like? Is he telling us that he’s getting to be too old for cartoons? We may never know, but next time he has one of his crying episodes we’ll have to see if M*A*S*H is on.

 

Mini Vacation

This past weekend we went up to Lake Lawn Resort and spent a couple of days with my side of the family. It’s been a family tradition for four generations now. We always used to go up there for Easter weekend, but now that the younger generation is off to college and starting out in the workforce, it’s been hard to get everyone together over Easter. Summer seems to be better on everyone’s schedule so we switched to summertime a couple of years ago.

How much stuff do you pack for a two-night getaway? This is how much we have to pack…most off it is for James. Suction machine, percussion vest for his morning chest therapy, oxygen tank, feeding supplies, diapers, and of course his clothes. For Stacy and me it’s just clothes and some munchies for the car.

Several travel bags sit on a hardwood floor in front of closed paneled closet doors. The group includes a red duffel bag with white animal shapes, a blue patterned duffel, a large gray‑and‑teal duffel, a black‑and‑gray geometric tote, and a black rolling suitcase. On top of the suitcase is a compact suction machine with a handle and tubing, suggesting medical gear packed for the trip. The scene feels organized and intentional, capturing the moment right before heading out.
All this stuff for a two-night vacation…

 

A section of a home interior shows a patterned area rug with rectangular designs in green, red, brown, and beige tones. On the rug sit two storage bins: one black‑and‑white with polka dots, and another decorated with colorful flip flop prints. The flip flop‑print bin holds a bag labeled “SKINNY” along with other small items. Beside them is a small wooden side table with slatted sides, a basket on top, and miscellaneous objects stored underneath. To the left, a low shelving unit holds stuffed toys, including a dog plush. In the background, woven rugs and a black patterned bag rest on the floor, giving the space a lived‑in, organized feel.
…this stuff, too

 

Monday we drove into Lake Geneva to have lunch at Sprecher’s Restaurant and Pub and walk around a bit.

 

Stacy and James are indoors, Stacy standing with a backpack and the James seated in a wheelchair. Stacy wears a light tank top and leans slightly toward the camera. James wears a red shirt with a shark graphic, sunglasses, and a playful black hat shaped like a cartoon bird with a yellow beak. His wheelchair includes neck support and visible medical equipment. Behind them, a wooden wall is decorated with multiple identical cartoon bird faces with bright yellow beaks, along with bottles and a small sign, giving the space a cheerful, themed‑restaurant vibe.
At Sprecher’s Restaurant and Pub

 

Monday night the resort had a nice fire down by the lake and provided all the ingredients to make s’mores. I snapped a pic of James by the fire, posted it on his Facebook page and tagged the resort. Two minutes later the resort shared the post on their Facebook page. How cool is that?

 

A screenshot of a Facebook post shows Lake Lawn Resort welcoming guests and mentioning how glad they are that people are enjoying the nightly bonfire. Below it, a post from “Fans of James” notes they are at Lake Lawn Resort and adds the caption “Momma wanted some s’mores.” The accompanying photo shows a group gathered around a circular stone fire pit with a bright bonfire in the center. White Adirondack chairs surround the pit on a paved patio, with some people sitting and others standing. A child is visible near the fire, and soft outdoor lighting and grassy areas in the background give the scene a cozy, evening‑at‑the‑resort feel.
The resort shared James’ Facebook post

 

It’s always nice to get together with my aunt, uncle, cousins and their kids to catch up, but I also like taking some time to just sit by the lake. There is something so calming about listening to the water roll in.

 

A peaceful lakeside scene shows a wide stretch of calm water with soft ripples. A curved concrete walkway borders the edge, with a strip of green grass in the foreground. A few small boats sit far out on the lake. Across the water, a tree‑lined shoreline is dotted with houses partly hidden among the trees. The sky is clear and bright, giving the whole scene a quiet, sunny, early‑summer feel.

 

A calm lakeside scene shows the sun low in the sky, casting a soft reflection across gently rippling water. Several boats are docked along a pier that extends into the lake. A paved walkway and a strip of grass line the shoreline, with trees in the background catching the warm light. The sky is partly cloudy, giving the whole scene a quiet, early‑morning or late‑day stillness.