Bring on 4th Grade!

Back to School

A two‑photo collage shows James lying in his cushioned recliner with a zigzag‑patterned cover. He is wearing a light blue shirt with darker blue sleeves. The room has a beige carpet and part of the couch is visible in the background. Bold text overlays the collage, reading “ONE COOL DUDE!” and “BRING ON 4TH GRADE!” The overall feel is upbeat and celebratory, marking the start of a new school year.
Back to school haircut

 

And just like that summer is over. James went back to school yesterday, his birthday party is this weekend, and he officially turns 9 on the 29th. It’s really hard to believe that our little dude is turning 9…or that he’s starting 4th grade. The one-on-one nurse he’s had for the past few years has taken another job in the district so James will be starting the school year with a new nurse. Fingers crossed she’s a good one.

We’ve had a few really good nurses over the years, but we’ve also had a situation where James missed a bunch of school because a nurse that was assigned to James either didn’t show up, or worked with him for a day and decided they couldn’t handle it and quit. While we were angry at first, we understood. James is a lot to handle. To be honest, if he wasn’t my kid, I don’t think I could handle it either. It takes a special person to give James the care he needs. Let’s hope that the new nurse is one of the special ones.

 

James lies on cushione recliner, holding a sign that reads “FIRST DAY OF 4th Grade.” The sign has a playful, decorative border with cartoon‑style accents. James is wearing a dark blue shirt featuring 'Ham' from "The Sandlot" and the iconic line “YOU’RE KILLING ME SMALLS.” The scene feels like a cheerful first‑day‑of‑school moment, capturing both personality and the milestone.
First Day of 4th Grade

 

James sits on our front porch in his wheelchair wearing a dark blue shirt, supported by a red‑and‑blue striped neck pillow. The wheelchair armrest padding has a travel‑themed pattern with road signs and bold colors. James holds a sign that says “FIRST DAY OF 4th Grade.”
Waiting for the bus

 

Outdoors on a sidewalk beside a grassy area, James sits in his wheelchair holding a sign that says “FIRST DAY OF 4th Grade.” He is wearing sunglasses and supported by a soft neck pillow. Next to him, his nurse kneels with a yellow backpack, smiling warmly toward the camera. The scene feels bright, supportive, and celebratory — a shared moment marking the start of a new school year.
James with his new one-on-one nurse

 

James is being assisted onto a yellow school bus in his wheelchair by the bus driver wearing a reflective safety vest. The wheelchair has a small stuffed toy attached, and James is holding a sign that reads “FIRST DAY OF 4th Grade.” The bus lift platform is raised, and the scene captures an early‑morning, getting‑ready‑for‑school moment that highlights care, accessibility, and the start of a new day.
Getting on the bus

 

Seizure Drug Study Completed

Last week we went to the last appointment for the drug study that James has been a part of for the past year.  Poor dude had to do one more EEG.

 

A bright collage features two photos over a background sprinkled with colorful confetti shapes. At the top, bold text reads “LAST RUSH DRUG STUDY APPOINTMENT!” The first photo shows James and Stacy sitting in a car: Stacy wearing oversized sunglasses and smiling, James reacting with a playful, expressive face. The second photo is taken from behind the driver’s seat, showing Jeff driving with both hands on the wheel. A cartoon thumbs‑up graphic sits near the bottom. The overall feel is upbeat and relieved, marking the final trip in a long medical‑study journey.
On our way to the last drug study appointment

 

James lies in a hospital bed with a white pillow behind his head while a medical professional in purple gloves gently works to put EEG leads on scalp. James is wearing a gray T‑shirt with a stacked s’mores graphic and the words “NEED S’MORE.” A hospital wristband is visible on his arm, and the setting has the clean, clinical look of a patient‑care room. The moment feels quiet and attentive, focused on comfort and care.
Getting prepped for the EEG

 

James lies in a hospital bed with his head wrapped in gauze pads that hold multiple EEG electrodes in place. Thin colored wires trail from each electrode toward monitoring equipment out of frame. James' eyes are closed, and the room has the clean, clinical look of a neurological testing setup. The scene feels quiet and focused, capturing a moment during a detailed brain‑activity study.
EEG leads are on

 

The results have been nothing short of amazing. This is a drug that is approved for those 12 and older; the study is to see how it works in younger kids. We never met any of the other kids in the study, but we hope that they had similar results to James, and we hope that this drug gets approved so more kids can hopefully get similar relief from seizures that James has.

The numbers speak for themselves. We started tracking James’ seizures a month or so before the study started, and had to track them throughout the study. The pic below are numbers of seizures and clusters we recorded on August 16, 2017 which was a week after James started taking the drug, and August 16th of this year. The “s” in the picture are seizures for the day, and the “c” indicates clusters, which for James, are five or more seizures within 5 minutes.

 

A sheet of paper shows three short handwritten entries in blue ink, each using dates and brief numeric notations. The first line reads “8/16/17 – 31 S,” the second line reads “4 c,” and the third line reads “8/16/18 – 0.” Below the paper, printed text says “Beautiful day” in bold black letters. The layout suggests a simple comparison of daily seizure counts recorded one year apart.

Amazing, right? We do have one more follow-up appointment next month, but I’d say this study was a success. At least it was for James. Hopefully the other kids in the study had similar results and didn’t have any adverse reactions.

 

Medical Supply Organization

When you have a medically fragile or special needs child like James, you need to find a way to organize all of the medical supplies that they need. Years ago we bought this toy storage unit from Ikea to help organize those supplies.

 

A white storage unit with multiple shelves and drawers is neatly arranged, with several green plastic bins tucked into the compartments. On top of the unit sit two stuffed animals, an aerosol can, and a small stack of papers or books. Nearby shelves hold additional boxes, and a lined trash bin sits to the side. The setup looks like a clean, organized medical‑supply storage area within a home.
Medical supply storage in James’ bedroom

 

One of the drawers used to filled with various sized syringes: 1 ml, 3 ml, 5 ml, 10 ml, 30 ml, and 60 ml. They were all just kind of thrown in the drawer which made grabbing the one you need sometimes difficult. Stacy finally found a solution to the problem: a silverware holder that you would normally see in a kitchen drawer:

 

An open drawer reveals a metal silverware holder filled with syringes of different sizes. Some have orange caps on the ends, while others are uncapped and laid neatly in separate compartments. The drawer is part of a green storage unit with a white top, and everything is arranged in an orderly, ready‑to‑use setup typical of organized medical‑supply storage.
Silverware holder for syringes

 

Genius! It also helps us see which syringes we’re running low on.

 

Miscellaneous Stuff

Every so often James gets a box in the mail from Bounce Children’s Foundation, usually around holidays like Easter, Thanksgiving or Christmas. The boxes are filled with activities and other things related to that holiday. They may have coloring books, or supplies and directions for an art project based on the specific holiday. We recently received one of these boxes for “National Relaxation Day” (didn’t know that was a thing) and Stacy thinks it may be more for her than for James. Momma could use some relaxation. If only James could draw her a nice soothing bubble bath to soak in. I guess that’s my job.

 

A four‑panel collage shows materials from a relaxation‑themed care package. The top panel displays a printed instruction sheet for a “DIY Rice Search & Find” activity, listing materials and simple steps for making a sensory jar. The middle‑left panel shows a “National Relaxation Day Coupon Book” with blank “To” and “From” lines. The bottom‑left panel features a printed page describing different relaxation activities such as tea, cookies, coloring, mindfulness, and bath items. The right panel shows James lying down surrounded by the included supplies — a bag of rice, cookie mix, colored pencils, and other small items — arranged around them. The overall feel is warm, supportive, and centered on comfort and calming activities.
A Bounce box for National Relaxation Day

 

Then again, James may be the one who needed the relaxing bubble bath. Stacy had a girls day with my mom, sister, and her daughter, so James and I had some boy time. He was fine for a while and then he went into one of his crying fits. In the past we’ve found that if we change the TV channel to something else he calms down. Not this time. I couldn’t figure out what had him so upset. He ultimately cried himself to sleep. Maybe he just missed his momma.

 

Jeff and James lie close together indoors, Jeff's head resting near James. James, wearing a bright green shirt, has eyes closed and mouth open in a way that suggests crying or distress. Behind them is a red couch with patterned pillows, a blanket, and a small table with scattered items. Soft natural light comes from a nearby window, giving the scene a quiet, intimate feel.
Crying James

 

One last picture before I end this post. James’ cousin Sarah has always been compassionate towards him. It’s really sweet and good to see. Here they are hanging out watching some TV:

James and his cousin lie on a carpeted floor in a relaxed, close position. James is wearing an orange “Young Athletes” shirt and rests on a pillow, while his cousing lies beside him in a blue shirt and dark shorts. Around them are blankets, pillows, and a nearby medical device with tubing, creating a supportive, comfortable setup. The scene feels like a quiet moment of rest or recovery shared together.
James and his cousin Sarah