Covid

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

Day 2: Christmas

Day 3: St. Patrick’s Day

Day 4: 4th of July

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.

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.

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?

 Stroke Awareness Month

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.

Happy Mother’s Day

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.