Pneumonia, Spinal Fusion Update, Fundraiser, Wedding, School, Easter, Jackson, and Our New Sign

I feel like I’ve gotten off track a bit. I was doing so good for a while with keeping up with the monthly posts. These past couple of months have been a bit hectic with Spring Break, James being in the hospital for a couple of days, and then Easter. The last monthly post was on March 3rd, so I’m going to try to get caught up in this one. Hopefully it won’t be too chaotic, and I can keep it somewhat organized.

 

Pneumonia

I guess I will start with the brief hospital stay since I mentioned it in the above paragraph. He started having one of his respiratory episodes on Saturday, April 13th. We did our best to get him to come around, but when he was still struggling Sunday morning, we decided to was time to call in reinforcements.

One of Stacy’s dog walking clients is a nurse at the hospital, so she called her to see if she was available to come over and check him out. After listening to his lungs, she recommended we go to the ER to get a chest x-ray to check for pneumonia. Our pediatrician agreed.

 

James lies on a hospital bed with a transparent oxygen mask secured by green straps, the tubing connected to a supply bag resting nearby. His eyes are closed, and his head rests on a blue medical sheet. A tissue sits close to his face, and a red‑and‑blue patterned fabric is visible near the shoulder area. The surrounding equipment and furniture indicate a clinical setting.
In the ER

 

James lies in a hospital bed with a nasal oxygen tube in place and a neck support pillow behind their head. An IV pump and tubing are visible in the background. James holds a package of Lorna Doone shortbread cookies in one hand, adding a small comfort item to the clinical setting.
Holding Mommy’s Lorna Doone cookies

 

She was right. In the ER they did a nasal swab, bloodwork, and an x-ray that showed pneumonia. Once the ER doc sees that there’s pneumonia, we know what happens next. Sometimes we fight to take him home with antibiotics. This time we decided that the hospital was the best place for him and didn’t fight it, so up to his hospital room we went.

 

James lies on a bed or flat surface with his head turned to the side, wearing a nasal oxygen tube. The setting appears clinical, with medical equipment and indoor lighting contributing to a hospital‑like environment. James' face is partially visible, and the overall scene conveys a moment of rest or care within a medical context.

 

By Sunday night he was doing much better. They had him on just 1 liter of oxygen and his numbers were fantastic.

 

A winter‑themed collage features a snowflake background and the phrase “COOL AS A SNOWFLAKE” at the top. One photo shows James lying on a medical bed wearing sunglasses and a nasal oxygen tube, with a green pillow behind his head. The second photo shows a medical monitor displaying readings alongside two white cups and a bottle on a counter. Two red heart graphics appear in the lower corner, adding a light, supportive touch to the layout.

 

Although he was doing good, they wanted to keep him overnight just to make sure he didn’t back track and take a turn for the worse. On Monday, while we were waiting for the doctor to make the decision if James could be released, James played a game of Bingo—with mommy’s help of course—and he won!

 

A colorful sprinkle‑patterned collage is divided into three sections. The top‑left shows a Bingo card with numbered squares and bright Bingo balls labeled with the letters B, I, N, G, and O. The bottom‑left shows a screen announcing “Congratulations Winners!” followed by four names and a small koala graphic. The right side features James lying on a bed with a nasal oxygen tube, with a pink Bingo card labeled “Game 2,” next to his head.
Winner, winner, chicken dinner!

 

James lies on a bed with a nasal oxygen tube in place, his head resting on a green pillow decorated with cartoon owls. In the foreground, Stacy's hand holds a packaged toy labeled as a light‑up animal‑themed personal fan, with blue and transparent parts visible through the plastic. The scene captures someone showing the toy to the person on the bed within a clinical or recovery setting.
Not a chicken dinner, but did win this cool fan…pun intended!

 

James was cleared to go home Monday evening, which was good because there was a fundraiser planned for James on Wednesday night. More on that later.

 

James and Stacy sit inside a vehicle, both secured with seatbelts. James wears dark sunglasses and a checkered garment, supported by a colorful neck pillow. Stacy sits beside him in a dark jacket. Bags and other items rest behind the seats, and the interior of the vehicle frames the scene, suggesting they are traveling.
Heading home from the hospital

 

It’s been almost two weeks now since that hospital stay and for whatever reason he’s still struggling. He’s just not back to his normal baseline. Just when we think he’s almost there, he falls back a bit. This morning, he fell back again:

A two‑part collage shows James lying on his cushioned reclinder, wearing a yellow‑and‑white shirt and receiving a nebulizer treatment. Text beside the image reads “TRYING TO STAY HEALTHY FOR SURGERY.” Below, a close‑up of a medical monitor displays two large numbers in red and green.

 

 

Spinal Fusion

We were notified on April 19th that the spinal fusion surgery was approved by insurance, and it has been scheduled for May 23rd. Because James has been struggling a bit to get back to his baseline after this latest bout of pneumonia, we made the decision to keep him home until the surgery. This surgery is too important, and he needs to be healthy.

If you can send up a few prayers for James to be healthy enough for surgery, we’d really appreciate it. While you’re at it, say a few prayers for Stacy and I as well. We’re getting more and more nervous as surgery gets closer, and now we have the added stress of his health these past few weeks. Thank you.

A few people have asked us about the surgery and what it entails. Here is a short video from Children’s Hospital Colorado that explains the surgery really well:

 

 

 

Fundraiser

In mid-March we were notified that James was nominated to be a “Brigade Buddy” for The Lemonade Brigade:

https://www.facebook.com/lemonadebrigade/videos/328036201071197

We had no idea what this meant, and we had not heard of The Lemonade Brigade before. Stacy reached out to them to find out what this was all about. The Lemonade Brigade is a group of kids who raise money for kids in need by selling lemonade throughout the summer. James was nominated and chosen as one of their recipients this year. They wouldn’t tell Stacy who nominated him, but we found out later that it was one of his Facebook followers.

In addition to being a recipient of funds raised through their lemonade sales, they also work with local restaurants to have a “Dine and Share” event where a certain percentage of profits will go to James. Our Dine and Share was on April 17th at Culver’s. We had a pretty good turnout and want to thank The Lemonade Brigade, everyone who came out to support us, Culver’s for being so generous, and of course the woman who nominated James.

 

Five people pose together indoors, James seated in a wheelchair wearing colorful comic‑themed clothing and sunglasses. Four others stand around them smiling. Two wear bright yellow shirts with a lemon‑themed “Lemonade Brigade” design, while Stacy and Jeff wear purple and red shirts, respectively. The setting includes tiled flooring and a freezer case stocked with ice‑cream items in the background, giving the scene a casual, friendly atmosphere.
Lemonade Brigade fundraiser for James at Culver’s

 

 

Wedding

James’ one-on-one nurse at school got married in early March and invited us (and James of course) to the wedding.

 

James, his nurse, and her husband gather at a wedding reception. James sits in his wheelchair wearing a white shirt, yellow tie, and padded neck support. His nurse, the bride, wearing a white lace dress with a floral headpiece kneels beside James, while the groom in a dark suit stands behind them. A brick wall and tables set with plates, glasses, and seated guests fill the background, giving the scene a celebratory, welcoming atmosphere.
James with his one-on-one nurse and her husband

 

James and Stacy sit close together against a brick wall. james is in a wheelchair with a headrest and a gray, red, and blue neck pillow to support his head. Stacy leans in toward him, meeting his gaze at close range. The scene captures a quiet moment of connection and attention between the two.
James and Mommy

 

James and Jeff are indoors against a brick wall. In the foreground, James sits in a wheelchair with supportive padding and a headrest, wearing a white shirt, yellow tie, and a red and blue neck pillow. Behind him, Jeff is positioned close, looking toward the camera.
James and Daddy

 

It was a beautiful wedding, but there was one moment that really brought a tear to my eye. At the reception, several ladies, the bride included, started dancing with James.

 

 

 

School

We went to the Fun Fair at James’ school:

 

In a classroom, James, sitting in his wheelchair, participates in an activity with support from Stacy who is wearing a bright green shirt. They’re playing a “Trunk Toss” game featuring a cartoon elephant with a raised trunk and yellow rings meant to be tossed onto it. Behind them are wooden cabinets, a sink area, and bulletin boards decorated with photos and month labels, creating a lively, school‑like setting.
Trunk Toss

 

In a classroom, James, sitting in his wheelchair, takes part in a beanbag‑toss game with support from Stacy in a green shirt. Another person in a black shirt holds a red beanbag nearby. The target is a playful setup resembling a toilet seat mounted on a blue stand. Behind them, a whiteboard and colorful posters showing illustrated facial expressions add to the lively, school‑focused environment.
Toilet Toss

 

In a classroom, Stacy in a bright green shirt with a monkey logo and the words “Rollin’ for James” assists James seated in a wheelchair. They both hold an orange flexible object together, engaging in an activity. Behind them, the walls are covered with classroom posters, including a set of rules, alphabet letters, and color‑coded behavior cues. The space feels structured, colorful, and supportive.
Making a Fruit Loop bracelet with Mommy

 

James sits in a supportive wheelchair wearing a black shirt with a red‑and‑white “Home of the Stallions” logo. A padded neck support with red and blue sections is secured around his shoulders with a black strap. A colorful cereal‑bead bracelet rests on his wrist. Beneath him is a bright, patterned floor mat with bold shapes and colors, adding a playful backdrop to the scene.
Wearing the Fruit Loop bracelet he made with Mommy

 

James sits in a wheelchair in a hallway, wearing a black “Home of the Stallions” shirt, blue jeans, and a red‑and‑blue neck pillow. Stacy stands beside him in a bright green shirt with a cartoon monkey logo, holding a long red balloon shaped like a sword. Bulletin boards and student artwork line the hallway walls, giving the space a cheerful, school‑community feel.
The balloon artist made him a sword and he attacked Mommy with it

 

In a classroom or therapy space, James sits in a wheelchair wearing a black shirt with a red design and padded arm supports decorated with travel‑themed patches. Stacy, wearing a bright green shirt, helps him participate in activity by guiding his hands toward a tabletop setup with a yellow circular base and several metal cans, some upright and some knocked over, suggesting a game or coordination exercise. Another person in a dark sweatshirt stands nearby. Chairs, decorations, and supplies fill the background, giving the room an active, supportive atmosphere.
Knocking over the cans

 

A couple of years ago James was given a special stuffed monkey that has a g-tube just like he does. Stacy named him Timmy. They had a stuffed animal day at school, so Jimmy (aka James) and Timmy went to school together:

 

A stuffed monkey toy with a g-tube button sits upright on a black wheelchair. The chair has padded armrests covered in fabric with Route 66 and other travel‑themed designs, and a red frame is visible near the base. Footrests extend at the bottom. Behind the chair are a carpeted floor, part of a patterned rug, and a pink storage trunk against the wall, giving the scene a cozy, lived‑in feel.
Timmy is all ready to go to school with James

 

James lies face‑down on a padded arch covered with a blanket featuring characters from the movie “Cars.” A brown stuffed monkey rests on his back. The setting appears to be a classroom, with desks, storage bins, and school supplies visible in the background, creating a mix of playfulness and quiet rest.
Tummy time on the arch at school

 

Field trip to an art studio:

 

James sits in a wheelchair wearing a blue apron labeled “Art Füzd Social Art Studio,” with supportive neck padding and red wrist guards. He holds a paintbrush while his nurse steadies a small pink object for him to paint. The background shows an art‑studio environment with people, supplies, and equipment, creating a lively, hands‑on creative setting.
Painting a flower for Mommy

 

In an art studio, James sits at a table and wears a blue “Art Füzd Social Art Studio” apron, red wrist guards, and a padded neck support. A pink ceramic or clay flower sits in front of him beside a colorful paper plate used as a paint palette. Behind him, shelves filled with unpainted pottery pieces and other participants — some also using wheelchairs — create a busy, inclusive studio atmosphere.
His completed flower

 

 

Easter

James sits in a wheelchair wearing sunglasses, a plaid shirt, and a red‑and‑blue neck pillow. He is positioned in a doorway with household items in the background. The photo is framed with a pastel checkered border in pink, yellow, and blue, and the bottom of the image includes the text “HAPPY Easter 2019,” giving it the feel of a personalized holiday card.

 

On April 6th we had a nice breakfast with the Easter Bunny courtesy of our township’s disability services. We even made it into the disability services’ newsletter. Our picture is in the upper lefthand corner. I blurred out the other pictures for privacy reasons.

 

A printed event‑recap page titled “1st Annual Breakfast with the Bunny Event Recap” features a short summary about a community breakfast with a costumed bunny character. Several small photos show families and groups posing with the bunny and enjoying the event. The layout has a cheerful, newsletter‑style feel, highlighting a festive community gathering.
Disability services newsletter

 

Here’s the colored version of the picture:

 

Four figures pose together at an Easter celebration: James is in his wheelchair wearing a dark shirt with white text and supportive padding, Stacy and Jeff are standing behind him and smiling, and an Easter Bunny character is seated beside James. The bunny costume is white with a blue vest and yellow bow tie, and it holds James' hand. Behind them are festive decorations, including a bunny cutout and a balloon with a bunny face, creating a cheerful holiday atmosphere.
At the disability services’ Breakfast with the Easter Bunny

 

 

Jackson

March is kind of like a double awareness month for us. The entire month of March is Cerebral Palsy Awareness Month, and March 18th is designated at Trisomy 18 Awareness Day. We found out that our first son, Jackson, had Trisomy 18 at the 11-week prenatal appointment. We lost him six weeks later. We will always love him and never forget him.

 

A circular purple graphic features small teal and purple pennant flags across the top. In the center, white text reads “Trisomy 18 Foundation — Advancing Research. Empowering Families,” with a small square logo repeating the name in the upper right. A ribbon‑shaped banner at the bottom displays the message “National Trisomy 18 Awareness Day — March 18th, Wear Purple Day,” creating a clean, supportive awareness‑campaign design.

 

April 21st would have been his 10th birthday.

 

A colorful cupcake with white frosting, rainbow sprinkles, and a lit red‑striped candle sits against a softly blurred background of white bokeh lights. The wrapper has vertical rainbow stripes. To the left of the cupcake, cheerful text reads “Happy 10th Birthday Jackson.”

 

 

New Sign

Stacy came across a picture of a sign a while back and was interested in getting one for our house. She asked around in her various groups to see if anyone could make a sign like it or knew of anybody that could make it. A very nice woman made us the sign and didn’t even charge us for it. She did it out of the kindness of her heart. It says:

“Welcome. This is the home of a medically fragile child. Please wash your hands, remove your shoes, use hand sanitizer. Do not enter if you are sick, have been sick recently, or have been around someone who is sick. We appreciate your help in keeping our little guy healthy and germ free!”

 

A wooden framed sign stands outside a doorway, displaying a message for visitors entering the home of a medically fragile child. The dark background holds white and red text outlining hygiene requests such as washing hands, removing shoes, using hand sanitizer, and not entering when sick or recently exposed to illness. A small red heart‑rate line graphic appears at the bottom, giving the sign a warm but serious tone focused on protecting the child’s health.

 

 

Closing Thoughts

I think am all caught up with everything that has happened in our lives since my last post. As much as I would like to try to get back on track with the monthly posts, I don’t think it’s going to happen. Today is April 28th, which would mean the next post would be May 26th. With James having his spinal fusion surgery on May 23rd, I more than likely will not be able to post on the 26th. Maybe I’ll aim to post on the 19th instead.

In case I don’t get something posted on the 19th, please remember James’ surgery on the 23rd and say a few prayers for him. It is going to be a long surgery and he’s going to need all of the good vibes that he can get. And don’t forget to keep an eye on James’ Facebook page for surgery updates.