April 2023 Monthly Update

If you’ve been reading this blog for a while, you have probably noticed that I usually organize regular blog posts into sections: School, Holidays, Doctor Appointments, etc. Then I simply take each of those sections and use them in the title of the post. The problem with doing it this way is that if I have a lot of different things to share in a particular post, the title becomes pretty long. This monthly post is a good example. I have a lot of various things to share this month, and the original title was going to be “Van Fundraiser Update, Oral Surgery Update, New Headrest for Wheelchair, Father and Son Project, Awareness Days, St. Patrick’s Day, and an Award at School”, which seems awfully long for a title, doesn’t it?

I couldn’t figure out a good way to shorten the title so that it’s not 24 words long. Should I just pick one or two things to put in the title? But then how do I decide which things to use for the title and which ones “don’t make the cut”? I decided to just title this post as “April 2023 Update”, which isn’t very descriptive, doesn’t tell you what the post is about, but it also doesn’t have so many words that it could be mistaken for a short paragraph. I’ll try to continue to use the old descriptive post titles unless it ends up being really long, then I’ll use the “[Month] [Year] Monthly Update” format.

I know, you probably don’t care too much about the titles of the post, do you? You just want to catch up on James’ life, right. Well, let’s get to it…

 

Van Fundraiser Update

We’d like to thank each of you that has donated to our fundraiser. We still have a long way to go, but we are extremely appreciative of all of the donations we have received so far. If you are interested in making a donation, you may do so here:

https://helphopelive.org/campaign/21730/

Stacy created and added this video to the fundraiser site:

 

 

She has been trying to add a few extra dog walks when she can and has also been looking for places to sell some of James’ old t-shirts to raise a little bit of money to put away for the new van.

 

Several neatly folded stacks of shirts sit on a wooden surface. The front left stack has an orange T‑shirt with a cartoon figure wearing sunglasses and a hat that says “CHILLAX DUDE.” The front right stack has a red T‑shirt featuring a shark and the words “I CHEWS YOU.” Behind them are more folded shirts, including a dinosaur graphic tee, a plaid shirt, and other assorted kids’ clothing. A sewing machine and a box labeled “PREMIUM” sit in the background, giving the scene a tidy, organized feel as if items are being sorted or prepared.
Selling James’ old shirts to raise money for a van

 

Selling his t-shirts brought up something that I’ve had in the back of my mind for a while. Every so often Stacy buys James a funny or inspiring special needs related t-shirt, like this one:

 

James lies on a cushioned surface covered with a white‑and‑gray polka‑dot sheet. He is wearing a bright yellow T‑shirt with red text and a simple graphic of a feeding tube. The shirt reads, “I can eat while I sleep — What’s your SUPERPOWER?” The scene feels relaxed and casual, with the humor on the shirt adding a light, personal touch.
I can eat while I sleep. What’s your superpower?

 

Do you get it? Because he is tube fed, he doesn’t need to be awake to eat. I’ve been wondering if making and selling silly shirts like this would be a worthwhile endeavor to make a little extra money for the van or for James’ medical fund. I may start looking into this. As long as it doesn’t cost too much up front, I may try it and see how it goes.

 

 

Oral Surgery Update

James has been having frequent (or ongoing) respiratory issues for a while now. We haven’t figured out the cause yet, but one of our thoughts was that it may have something to do with his lower jaw being so narrow that his tongue doesn’t sit flat on the bottom of his mouth. Instead, it lies on an angle.

A few weeks ago, we met with the oral surgeon who removed several of James’ teeth back in 2018 only to find out that he is no longer associated with the hospital. He gave us the contact info for another oral surgeon who works out of a hospital that was much farther away and that we have never been to. We weren’t comfortable with that idea, so Stacy decided to make some calls to some pediatric dentists in the area to see if she could get any leads on an oral surgeon.

She got lucky and found one that was associated with the hospital about ten minutes away from us. We met him on March 28th, but unfortunately, he did not feel comfortable doing the extensive surgery that James’ might require. He did, however, send James for a CT scan that he would pass onto some colleagues at Loyola Medical Center that may be able to help. We haven’t heard anything yet but will give them another week before we call and follow up with them.

 

 

New Headrest for Wheelchair

We’re trying a new type of headrest on his wheelchair to see if it works better for him. Not because the other headrest wasn’t good. Just trying something new.

 

James sits in a wheelchair in what looks like a classroom or therapy room. He wears glasses, a gray graphic T‑shirt, and a supportive neck pillow with a green handprint pattern secured by a strap. Behind him are wooden cabinets, a desk with papers and folders, and a blue padded therapy structure. The setting feels organized and functional, suggesting a school or care environment.
The old headrest on James’ wheelchair

 

This is the new one:

 

James sits in a wheelchair wearing a red‑and‑blue plaid shirt, clear protective glasses, and a black harness that provides torso and head support. The background shows a classroom or therapy‑room setting with wooden cabinets, a countertop, and a window, giving the space a practical, organized feel.
The new headrest on his wheelchair

 

We’re not sure if we like this new headrest, but we’re going to give it a little bit of time to see.

 

 

Father and Son Project for the Dog

Maggie has been part of our family for about two and a half years now and we’ve learned that she is not what I would consider a typical dog. Most dogs would chase rabbits, squirrels, and birds out of their yard. Not Maggie. Most dogs would fetch a ball or a stick. Again, not Maggie. Toys? Nope. About the only time she gets excited about something is when there’s food involved. She seems to be very food motivated. I suppose that could be a result of her being a stray and having to scavenge for food. They rescue told us that she was really skinny when they found her.

I joined the Canine Enrichment Ideas Facebook group a while back hoping to get some ideas of things that we could do to entertain her or give her a little bit of mental stimulation, and I think I may have finally found something. Someone had posted that they bought their dog this toy where you put dry dog food into these bottles and the dog has to spin the bottles to get the food out. Since Maggie loves food, I thought this would be perfect for her, so I bought it. It’s a Loobani Dog Puzzle and is available on Amazon. Once it arrived, James and I put it together while Maggie supervised.

 

Two people sit on the living‑room floor working on an assembly project. Jeff holds an instruction sheet and points to one of the illustrated steps, while James lies on a cushioned recliner nearby watching. A dog stands close to them, curious about the activity. Wooden pieces, a screwdriver, and a bottle are spread out on the floor, with a TV, cabinet, and other household items in the background, giving the scene a casual, busy, home‑project feel.
Reading the directions

 

Jeff kneels on a carpeted floor using a screwdriver to attach a wooden piece shaped like a dog bone to a flat plank. More bone‑shaped pieces and small containers sit nearby. A dog lies close, watching the work, while James lies on a cushioned recliner beside the scene observing. The room feels cozy and lived‑in, with furniture and household items in the background, giving the moment a relaxed, home‑project atmosphere.
Starting to put it together

 

In a living room, Jeff sits and uses a screwdriver to work on a wooden piece while James lies on his cushioned recliner nearby with a plush brown dog‑shaped neck pillow resting around his neck and a nasal oxygen tube in place. A TV in the background shows a program on Freeform, and a cabinet with storage boxes and wall decorations adds to the lived‑in feel of the room. The scene captures a quiet moment of care, presence, and practical help.
This piece goes here

 

Jeff holds a wooden dog‑toy piece shaped like two connected bones, each with small paw‑print engravings. The center is marked with the brand name “loobani” and a simple outline of a dog’s head. A dog lies in the foreground looking toward Jeff and the wooden piece. More wooden parts and an instruction sheet lie on the floor, suggesting an assembly project. In the background, a TV shows an animated scene with a chef character, and household items like storage bins, dumbbells, and shoes add to the casual, lived‑in feel of the room.
The base is finished

 

Jeff works on assembling a wooden dog‑themed stand, holding one of the pieces marked with paw‑print designs and the word “loobani.” A large light‑brown dog lies on the carpet nearby. Two small cylindrical containers with orange lids sit close to the project, along with a striped fabric item and a piece of furniture with storage baskets in the background. The scene feels like a calm indoor workspace with a pet‑focused project underway.
Putting the sides on

 

Jeff holds a wooden pet‑feeder stand marked “loobani,” with four paw‑shaped feet and two raised supports. In the foreground, James rests on a pillow with a nasal oxygen tube in place. The living room around them shows a TV playing an animated movie, shelves with dumbbells and storage boxes, and other everyday household items, giving the moment a quiet, practical, home‑care feel.
Sides complete

 

A light‑brown dog lies on a carpeted floor beside a wooden puzzle toy with three vertical posts and three small cylinders topped with orange lids. The base has engraved paw prints. Around the dog are pillows, a zigzag‑patterned fabric, athletic shoes, and assembly items like a screwdriver and plastic packaging, giving the scene a casual, mid‑project feel.
Put the round piece of wood through the holes in the plastic bottles

 

A light‑brown dog lies on a carpeted floor watching as Jeff interacts with a wooden puzzle toy. The toy has three clear plastic containers with orange lids mounted on a horizontal rod held by a wooden frame engraved with paw prints and the word “loobani.” In the background are storage boxes labeled “LOVE,” a dumbbell, and other household items, giving the moment a relaxed, home‑project feel focused on enrichment and curiosity.
Attach it to the sides

 

Maggie, a light‑brown dog, lies on a carpeted floor beside a wooden interactive toy labeled “loobani.” The toy has three clear plastic containers with orange lids mounted on a horizontal rod, designed to spin when nudged. Jeff in a dark long‑sleeved shirt kneels nearby, adjusting or demonstrating the toy. Behind them is a wooden cabinet with storage bins and other household items, giving the moment a calm, home‑based feel focused on enrichment and curiosity.
And it’s done

 

A large dog lies on a carpeted floor with its head positioned under a wooden puzzle feeder that holds three small cylindrical containers. Jeff kneels nearby, watching or helping as the dog interacts with the toy. Cushions, a storage bin, and weights sit in the background, giving the room a cozy, lived‑in feel and highlighting a quiet moment of enrichment and curiosity.
Maggie: “That was a lot of work!”

 

After we finished putting it together, I put some food it in, and showed Maggie how it worked. She would just watch me spin the bottles and got excited when the food fell out. She’d grab the food and wait for me to do it again. I took her paw and showed her how she could do it by herself, but she’d just wait for me to spin the bottles. After about fifteen minutes of this, I told her that we would try again tomorrow. The next day it was the same thing. I put food in it, and she would wait for me to spin the bottles and grab the food when it came out. She just wasn’t picking up on the concept, so I told her that we’d try again tomorrow. She is a smart dog so I knew that she would eventually get it.

And then something amazing happened. I was in the other room, and I heard the sound of the food clanking around in the bottles. I yelled to Stacy to see if she was working with Maggie on the toy. She said “no, I’m in the kitchen.” I peaked around the corner and sure enough Maggie was spinning the bottle by herself!

 

 

Awareness Days

There are awareness days for pretty much anything, aren’t there? Throughout March, there were not one, not two, but three awareness days that we partook in. First up was Trisomy 18 Awareness Day on March 18th. In case you are unaware, Stacy and I lost our first son, Jackson, to Trisomy 18. He passed away before he was born, and we never got to see him or hold him. If you’d like to find out more about Trisomy 18, this is an excellent resource: https://trisomy18.org/parents-families/

Light blue Trisomy 18 awareness ribbon tattoo on the inner forearm, with a silver bracelet on the wrist.
Stacy’s Trisomy 18 Tattoo

 

Trisomy 18 tattoo on a man's chest of a cross with a blue awareness ribbon, with the name ‘Jackson’ above and the date ‘11‑17‑08’ below.
My Trisomy 18 Tattoo

 

March 21st was World Down Syndrome Day. I’m not sure who came up with this cool idea to raise awareness for down syndrome, but they asked people to wear crazy socks to help raise awareness. James wore fish socks to support his friends and classmates that have down syndrome.

 

A group of people sit in a circle with their legs stretched toward the center, showing off bright, colorful, and mismatched socks. The image promotes “Rock Your Socks!” for World Down Syndrome Day on March 21, with bold text explaining who can participate, why it matters, and how to join in by wearing fun socks to celebrate differences. The overall feel is cheerful, inclusive, and community‑centered.
James wore fish socks to support his friends with Down Syndrome

 

Finally, March 25th was Cerbral Palsy Awareness Day. A day where we wear green to celebrate James and all of his classmates and friends that have cerebral palsy.

 

A green poster announces “March 25th is National Cerebral Palsy Awareness Day!” in bold white text. Below it, a green polka‑dot section reads “Annual March CP Fundraiser” in large black lettering. The lower portion shows James outdoors in a wheelchair wearing a blue‑and‑white plaid shirt and jeans, sitting in a grassy area with trees and a fence behind him. A green awareness ribbon appears in the bottom right corner, giving the design a supportive, community‑focused feel.

 

The month of March was Cerebral Palsy Awareness Month and Stacy had her annual fundraiser to raise money for the United Cerbral Palsy Center for Disability Services. The fundraiser ended at the end of month, but you can always  donate directly to the United Cerbral Palsy Center for Disability Services if you would like.

 

 

St. Patrick’s Day

James lies on a pillow decorated with colorful cartoon designs, wearing a green shirt with black sleeves that features a yellow electric guitar, lightning bolts, and the phrase “SHAM‑ROCK & ROLL!” A bright overlay in green and yellow reads “HAPPY ST. PATRICK’S DAY,” giving the image a cheerful, holiday‑themed feel.
Happy St. Patricks Day

 

 

School Award

James was awarded a certificate for embracing the three A’s of his school: Accept, Achieve, and Amaze. Those three A’s are quite fitting for James.

    • Accept: Throughout his life James has been teaching people to accept others regardless of their disabilities.
    • Achieve: He has achieved such a following of loyal fans.
    • Amaze: He has amazed us for the past thirteen years. From those two months in the NICU when the doctors couldn’t tell us how long he would live, or what his quality of life would be, he has persevered through all of the medical and health issues he has faced.

 

James sits in a wheelchair holding a certificate, wearing glasses, a light green shirt, and a patterned neck‑support pillow. The certificate congratulates him for embracing the three A’s — Accept, Achieve, Amaze — and includes the Assistant Principal’s signature. Behind him is a wall with blue geometric designs and the word “home,” while a person in a pink shirt and lanyard stands nearby, giving the scene a celebratory, school‑community feel.
James with his award certificate