Covid, School, James’ Health, New Stroller, Stroke Awareness Month, Happy Nurses Day, and Happy Mother’s Day

Covid

James lies on gace down on absorbent pads labeled “COVIDIEN,” with a hand resting near the bottom left corner that partially covers the lettering so it reads as “Covid.” James wears a gray and navy hoodie and rests his head on a small towel. A yellow pillow with colorful cartoon animals sits near the top of the frame, and a large laughing emoji covers part of the lower right area. The scene feels like a quiet moment of rest in a medical or home‑care setting.

 

Well, here we are, not even two months into this pandemic, and things don’t look like they’re getting any better. In fact, they’re looking much worse. Every day we’re watching the number of people infected with COVID-19 ticking higher at an alarming rate. An article I read about a month ago discussed the possibility of needing to social distance until 2022 unless a vaccine is developed. Great! How long does it take to develop a new vaccine?

Then I read another article last week that has me a bit freaked out. Apparently, there’s something that they’re calling pediatric multisymptom inflammatory syndrome that they suspect is linked to COVID-19 and affects kids. A 5-year-old boy in the US and a 14-year-old boy in the UK have died from it. It is rare, with only 100 cases being reported in the US, but that doesn’t ease my concern. If you look at the list of symptoms shared by New York state health officials, many of these symptoms are either somewhat normal for James, or things that James can’t verbally communicate about:

    • Prolonged fever (more than five days)
    • Difficulty feeding (infants) or is too sick to drink fluids
    • Severe abdominal pain, diarrhea or vomiting
    • Change in skin color – becoming pale, patchy and/or blue
    • Trouble breathing or is breathing very quickly
    • Racing heart or chest pain
    • Decreased amount of frequency in urine
    • Lethargy, irritability or confusion

All of this seems like a nightmare. Our mission from the day James was born has been to do everything we can to keep him healthy and give him the best possible life. What are we supposed to do now? Keep him in a bubble for the rest of his life? What kind of life is that?

In addition to that, several of Stacy’s friends who have kids with epilepsy have noticed an uptick in seizures. Could it be just a coincidence, or is this pandemic and staying home messing with our kids? Fortunately, we have not noticed any increase in James’ seizures thank God. As a matter of fact, we really haven’t noticed him having many seizures at all since his spinal fusion. I don’t know how correcting his scoliosis would be a cure for his epilepsy, but who knows. We’re just glad that he’s finally almost seizure free. Let’s hope it stays that way.

 

 

School

Let’s change gears and talk about something more uplifting. A few weeks ago, James’ school did a virtual spirit week. The theme was holidays. Every day they dressed up for a different holiday. It was a shortened week, so they only celebrated four holidays.

Day 1: Halloween

Two side‑by‑side photos show James lying on a cushioned surface while wearing a gray and blue Minecraft shirt featuring characters in diamond armor, along with blue Minecraft‑themed pants. In the right image, James' face is replaced with a pixelated Minecraft character head, and a pixelated diamond sword is added. A yellow pillow with fox designs and a red patterned blanket appear in the background. At the bottom, the name “James” is written in a blocky, Minecraft‑style font, giving the whole composition a playful, game‑themed twist.

 

Day 2: Christmas

James lies on a cushioned recliner with a brown stuffed dog resting on his shoulder. A digital Christmas filter adds a red‑and‑white Santa hat, round red glasses, and a white beard and mustache to his face. The background is filled with diagonal red and white stripes, giving the whole scene a cheerful, holiday‑themed look.

 

Day 3: St. Patrick’s Day

James lies on a cushioned recliner wearing a green shirt with gold lettering that says “Luck of the Irish,” along with printed suspenders and a bow‑tie design. A small plush dog rests on his shoulder. The image is framed by a colorful border of repeating rainbows on a pink background, and a graphic rainbow arcs toward a pot of gold near the bottom right. The overall scene feels playful and St. Patrick’s Day‑themed.

 

Day 4: 4th of July

James lies on a cushioned recliner wearing a blue shirt with a large Captain America shield logo. A stuffed animal rests near his shoulder, and a pillow supports his head. The image is framed with a border of red and blue stars, and a badge‑style graphic in the bottom right reads “USA” with “Happy 4th of July” beneath it. The overall scene blends a quiet resting moment with a playful Independence Day theme.

 

This month they’re doing spirit days for the entire month. Instead of posting pictures for the spirit days he’s already had, I’ll wait until the end of the month and make one post that includes all of the days. Stay tuned for that.

Stacy was an early childhood special ed teacher in a previous life…before James was born. Spending the entire school day with James has brought back memories of her teaching days. She had kept lots of her old teaching materials and books so at the end of his normal school day, she has been reading some of those books to him. He seems to enjoy the popup ones.

 

James lies on a cushioned recliner while another person holds open a colorful pop‑up book in front of him. The page features a large three‑dimensional purple octopus with curled tentacles surrounded by blue water and small fish, along with bold text repeating the word “Wriggle” and the label “Octopus.” The room has carpeted flooring, and household items in the background, including a blue bin and a table draped with a striped cloth. The scene captures an engaging, hands‑on reading moment with bright, playful marine imagery.
Stacy reading James one of the books she had when she was teaching

 

 

Health

Not much to report on James’ health this month. Hydration has been a bit of a balancing act. We don’t want him dehydrated, although with less hydration, there is less suctioning. Too much hydration and it’s just the opposite. Lots of secretions that need to be suctioned or he runs into breathing and respiratory issues and the potential for aspiration pneumonia. So, we’ve been trying to find the right balance between the two extremes.

He had an appointment with the ear doctor a couple of weeks ago for a routine checkup. Both ears look good, and the tubes are still in place. Just a little bit nervous taking him out in public, but until virtual doctor visits become more of a thing, we don’t really have much choice. Even then, I think it would be kind of difficult to have his ears checked virtually.

 

James sits in his wheelchair wearing a red jacket with white stripes on the sleeves. He has short hair and a colorful face mask decorated with cartoon vehicles. Around his neck is a yellow support cushion printed with Route 66‑style imagery, including cacti, mountains, and a sun. The scene is indoors near a window, highlighting the comfort and positioning provided by the adaptive setup.
Waiting for the ear doctor to check his ears

 

 

New Stroller

Stacy finally managed to have a successful walk with James since he’s been remote learning. He was usually zonked by the time he got home from school, and Stacy was in and out most of the weekend for work, but now that everything has changed because of Covid, she has a chance to take him for walks.

The first two attempts at taking him for a walk were terrible. He had outgrown his stroller, so he was very uncomfortable. We pulled some money out of James’ medical fund and purchased the larger size of the same stroller he had been using. The first time using the new stroller was a bit messy. He was having some digestive issues and food leaked out of his g-tube and went everywhere. Two weeks ago, they finally had a successful walk. So much more room in the new stroller, but damn they are expensive! It’s the Axiom Improv push chair, and we spent $1,400 on it! Can you tell that he like red?

 

James sits in a red stroller‑style supportive chair wearing a red Adidas jacket with white sleeve stripes, a red neck pillow, and dark sunglasses. Black harness straps secure him in place, and a feeding tube rests over a white towel positioned across his lap.
James in his new stroller

 

 

 Stroke Awareness Month

An informational collage about pediatric stroke awareness features several photos of children wearing shirts with motivational messages like “Be Brave. Be Fierce. Be Mighty.” Text boxes share facts about pediatric strokes, including that strokes can occur at any age, that infants have the highest rate, and that recognition is often delayed due to low awareness. The layout combines bright colors, bold headings, and supportive imagery to highlight the importance of understanding stroke risks in children.
PediatricStrokeWarriors.org

 

May is Stroke Awareness Month. While most people associate strokes with older people, did you know that kids can have strokes, too? Yeah, we didn’t either. Not until James was born and found out that he had a stroke in utero. You read that right. James had a stroke before he was even born. To find out more about pediatric stroke, please visit Pediatric Stroke Warriors.

 

 

Happy Nurses Day

It is a little bit belated, but May 6th was Nurses Day. A special thank you to all of the nurses that have taken care of James over the past ten years. And to all of the nurses out there right now on the frontlines of this pandemic, thank you for everything that you are doing. We’re praying for you.

 

James lies on a cushioned recliner, supported by pillows and holding a stuffed animal. Medical tubing and equipment are visible in the background, suggesting a care setting. The image is framed with colorful triangular patterns, along with graphics of a stethoscope and a heart with an EKG line. Text at the bottom reads, “Thank you for being my nurse!” creating a heartfelt message of appreciation.

 

 

Happy Mother’s Day

A decorative graphic reads “Happy Mother’s Day 2020 — The one when we were in QUARANTINE,” with colored dots between the letters of “Quarantine” in a style reminiscent of the Friends title design. The layout uses mixed fonts and spacing to create a lighthearted, nostalgic reference to celebrating Mother’s Day during the 2020 lockdown.

 

And to James’ best nurse of all, Happy Mother’s Day Stacy. I can never find the right words to describe what you mean to me and James. You are a truly amazing woman. James is lucky to have you as his mom, primary caregiver, chauffeur, and best friend.

 

Black‑and‑white photo of a James and Stacy sitting together on a wooden porch swing with floral cushions. James, wearing a dark sweater and jeans, leans toward Stacy, who wears a striped shirt and jeans. They face each other closely in a warm, affectionate moment. Behind them is a grassy yard with a fence and a small shed, giving the scene a calm, timeless feel.