Sorry that it has been so long since my last regular post. As you know, life has thrown us all a major curveball, and it has been quite the adjustment. I’m still trying to process and wrap my head around all of this. I am sure you are, too. It seems like the entire world changed seemingly overnight. In reality, though, it’s been coming for months. This will probably be a longer post as I catch you up on James’ life, and share my thoughts on this new reality that we’re all facing. I think I’ll start there.
The World Has Changed
When I first started hearing the news stories about coronavirus in January, one of my first thoughts was “as long as it stays over there, we have nothing to worry about.” Then after the first reported case in the United States was in Washington state on January 20th: “Okay, it’s only a single case, and Washington is 2,000 miles away from us.” Four days later, the second confirmed case in the US was reported at the hospital ten minutes from our house. The same hospital we take James to whenever he is having one of his respiratory episodes. “Okay, this is way too close to home now!” I started freaking out a bit, but eventually told myself that it would be okay.
Everything was going to be okay, wasn’t it?
Fast forward several weeks to early March when the CDC recommended older people and those with underlying health problems avoid large crowds. It was at that point that Stacy and I started having some serious discussions about what to do with James. Should we pull him out of school, keep him home, and put him in a bubble? James is a strong kid and has overcome pneumonia countless times, but if this virus is as bad as they say it is, I’m not sure he would survive it.
Around that same time, we got word that the school district was starting to put things in place for home schooling in the event that they decide to shut down. Two days later they notified us that their Spring Break was going to start a week early and give the kids two weeks off instead of one. They also told us that they would let us know what was going to happen after Spring Break as soon as they had it figured out. Would they be heading back to school, or would they switch to virtual learning? They had already sent James home with his Chromebook, iPad and schoolwork, so we had a good feeling that they were going to go virtual, and that’s exactly what they did.
While we were waiting for the school district to make their decision (return to the classroom or switch to remote learning), Stacy and I had already decided that James would be staying home. He’s perfectly capable of having respiratory issues on his own, he doesn’t need the help of some new respiratory virus.
I have also transitioned to working from home, which is taking some getting used to. It is nice not having to drive thirty minutes to and from work every day. I essentially get an hour of my life back every day, although I feel like I give that hour right back to work. I find myself too easily distracted at home, so I end up spending an additional hour each day on work. That’s something I have to work on.
One last note about coronavirus before I switch gears and talk about everything else that has happened in James’ life over the past six or seven weeks since my last post. I probably don’t have to tell you how amazing Stacy is. Even with all of the time she puts into caring for James, she is still thinking about others, and looking for ways to give back when she can. James has spent enough time at the hospital over the years that the nurses have gotten to know him (and us) pretty well. They do such an amazing job taking care of him (and Stacy) when he is sick. Now that we’re in the beginning of this pandemic, Stacy thought it would be nice to return the favor and put together some care packages for them. For each $15 donation, Stacy will purchase a Thirty-One pouch and then use her commission to fill them with little things that the nurses can use to take care of themselves. If you are interested in helping out, check out her Thirty-One Facebook group for more information.
James’ Health
Those of you who have been following James for any length of time know that his health is our primary concern. After all, if it wasn’t for all of James’ health issues, this blog wouldn’t exist, and you would have no idea who he was.
Up until a couple of months ago, Stacy and I were pretty convinced that it was going to be pneumonia that was going to take James’ life. He’s been in the hospital so many times with pneumonia that I’ve lost count, and every time I wonder if this is going to be the time that he doesn’t come home. But every time he does. He is our little superhero. Now with this coronavirus thing on the loose, I am extremely concerned that this is the thing that takes James away from us. He is a strong little dude, but I’m not sure if he’s strong enough for this virus.
Respiratory and Digestive Issues
We have had a few scares over the past few weeks. The first of which was on March 18th when he started showing signs of respiratory distress. The next morning a nurse from palliative care stopped by to check on him. She said that the left lung was diminished, but there was air flow. This put us into a bit of a predicament. Normally we would go to the hospital for a chest x-ray, probably get admitted if they saw pneumonia on the x-ray, get started on antibiotics, and come home a few days later. Things are different now. We’re trying to avoid the hospital at all costs. Obviously, if James was seriously ill, then we wouldn’t have a choice. Fortunately, we were able to nurse him back to health by doing dual nebulizer treatments every four hours and slowing down his feeds.
After a couple of days of the nebs and slower feeds he was doing much better. Then he took a step back, which is not abnormal for him. Two steps forward, a step back, and another two steps forward. That’s James usual road to recovery. He had been doing so well for so long that Stacy started wondering if it was positional. At school he goes from sitting up in his wheelchair, to tummy time on the floor, and they also put him in his stander. Maybe being completely upright in his stander was helping with his breathing and digestion. Stacy reached out to James’ teacher to see if there was a way we could go to school and pick up the stander to bring home to see if that helped. His teacher contacted the assistant principal who went to school (on a Saturday), picked up the stander, and dropped it off at our house! Talk about going the extra mile for your students!
It did seem to help with his breathing and his stomach was a bit less distended so it may have helped with digestion, too. We don’t see him in his stander that often because it is kept at school so hadn’t realized how tall he has gotten. With a mom that is 5’9” and a dad that is 6’2”, he was bound to be tall. Stacy and I are both standing straight in this picture:
He was doing much better for the next few weeks, and then started having some breathing issues again last weekend. I actually smelled it on that Friday. I know it may sound weird, but I can sometimes detect James giving off a different odor when he is sick. I can’t explain it, but sure enough, last Saturday night right before bed he started having some respiratory issues. Fortunately, it just took some nebulizer treatments and switching back to Pedialyte for a bit to bring him back around.
Like I said, it is usually two steps forward and one step back. Last Sunday, Easter Sunday, he woke up with a high heart rate and a fever. I’m sure by now that some of you may be asking if we have thought that he might have coronavirus. Of course, that has crossed our minds multiple times, but his symptoms haven’t been that much different than any of the other times he’s had respiratory or digestive issues. We really think that this staying at home because of the pandemic is messing with his body. He has outgrown his old stroller, and we have a larger one on order so hopefully we’ll be able to get him out of the house a little bit once it arrives. A change of position, location, and scenery, and some fresh air might do him good.
Spinal Fusion Checkup
In other health news, James had a checkup for his spine in early March. It’s hard to believe it’s been almost a year since his spinal fusion. Although it was a rough recovery, we’re very glad we did it. It has really helped keep all of his internal organs in line. If he hadn’t had the surgery, he probably would have wound up in the hospital with these respiratory and digestive issues he’s been having lately.
While we were waiting for the doctor to come in and go over the x-rays that they took, I noticed a copy of Highlights magazine in the magazine rack on the wall and it brought back memories of my childhood. I remember as a kid whenever I had to go to the doctor there was always an issue or two of Highlights in the waiting room. It was always my go-to thing to read (or skim through) while waiting to see the doc. I couldn’t help but skim through it while we were waiting. So, what’s your silly superhero name?
When the doc finally came in, he pulled up the x-rays on the computer monitor, and said that everything looks good. Look at all of that hardware that went into straightening his spine!
At Home EEG
James was supposed to have his annual overnight VEEG at the hospital, but because of coronavirus, he was able to do it at home. They sent a tech over with portable equipment, she put all of the leads on his head, wrapped it in gauze like they normally do, made sure everything was working, and then came back the next day to take the leads off and take all of the equipment back.
He doesn’t seem to mind having all of the stuff on his head. Taking everything off is a different story. Whatever goop they use to stick the EEG leads to his head is a pain in the ass to get off. He is not happy when mommy scrubs his head to get all of that goop out of his hair.
Stacy had a picture that she took of a VEEG that James did in 2017 and compared it to the one he just had. They look totally different. The one from 2017 seems to have a lot more activity than this years’.
I should note that the above EEG images above are just a snapshot of that moment in time and don’t tell the whole story. As the neurologist explained during our appointment a couple of weeks later, we need to look at all of the data recorded throughout the EEG. There were periodic spikes, lasting anywhere from 10 to 40 seconds, on both sides of the brain with more spikes on the left side. She did say that it did look a little bit better than the last one, though. Even though those spikes show seizure activity, we’re really not visually seeing them. Stacy noticed a seizure on March 11th, but prior to that, the last time we noticed him having one was back in May of 2019. So, his brain may still be seizing, but they are not nearly as powerful as they once were. We’ll take it.
School
We’re not really sure how much James understands, so we don’t know if this new world we’re living in is going to affect him at all. I would imagine other kids his age that have more cognitive ability might have a hard time with not being able to go to school and seeing their friends and classmates. Hopefully these lockdowns and remote learning will only last until the end of the school year and they’ll be back in the classroom in the fall.
About a month ago, before their two-week spring break and the transition to remote learning, James received a couple of notes from an admirer. “I do not care you are different I still like you.” “I forgot to tell you how amazing you are you always are quiet.”
Unfortunately, that will probably be the last “love letters” James will get for a while. It’s going to be kind of hard to pass notes to fellow classmates when they are all at home.
In addition to not seeing his classmates, James also won’t be hanging out with his one-on-one nurse at school or see any of his teachers and therapists. His nurse does stop by occasionally to go for walks. Socially distanced walks, of course.
His teachers arranged to stop by to say hi to James a couple of weeks ago, which was nice. Here’s a short video of it:
For those of you whose kids are also learning from home, how is it going for you? Stacy has found that James tends to fall asleep often during the school day. We wonder if he naps when he is actually at school as well, or if it’s just the lack of physical interaction while he is at home. It’s just him, his mom, his iPad and his Chromebook.
He does keep pretty busy at school, with regular classwork, art projects, therapies, etc. Now that is all gone. One of our main concerns is that he is missing out on all of his therapies…speech, hearing, vision, physical therapy, and occupational therapy. Obviously, his health is more important than anything else, but at the same time, we hope that not getting his therapies doesn’t put him back too far. We hope that things return to normal in the fall and he can get back to school and get the therapies that he needs.
Easter
Just like everything else, Easter was different this year. Our township’s Disability Services division canceled their annual Breakfast with the Easter Bunny that was scheduled for the weekend before Easter. They did drop off an Easter basket for James, though.
We didn’t get together with family like we normally do on Easter Sunday because of this whole social distancing thing. It was probably for the best, though. James was still struggling a bit healthwise and woke up Easter morning with a fever and a high heart rate so we probably would have stayed home anyway. We don’t know what is going on with him, but we’re pretty positive it isn’t coronavirus, or he would be a lot sicker than he is.
Easter dinner wasn’t anything fancy. Just a couple of ham steaks on the grill with some macaroni and cheese, potatoes and vegetables, and Stacy’s awesome corn casserole.
Other Stuff
Since James has been home from school since they shut it down, Stacy has been trying to get him out for walks around the block for some fresh air and a change of scenery. She has been trying to use the Axiom Improv stroller that we were gifted from the Tommy Finnegan Legacy Foundation about three years ago, but, unfortunately, James has outgrown it. It was such a nice stroller that we decided to break down and buy the next size larger. It is times like this that we are extremely grateful for the support and generosity we have received from family, friends, and even complete strangers. I don’t know how we would have been able to afford to spend over $1,000 on this without you. Thank you.
If you scroll back up a bit to when he was out for a walk with Stacy and his school nurse, his head was at the top of his old stroller. We haven’t had a chance to test out the new stroller yet because the weather has been a bit crazy, but it looks a bit roomier. Hopefully he will be more comfortable in it. The old stroller is on the right; the new one is on the left. We will be looking to donate the old wheelchair to another special needs family that can use it.
You may have noticed in some of the pictures above that James was in need of a haircut. There is a hairstylist that normally comes to the house to cut James’ hair, but since that can’t happen because of coronavirus, we had to cut his hair by ourselves. Neither one of us trusted ourselves to cut it with scissors, so we used the trimmer that I use to cut my hair. It is not a professional job, and he looks like he is ready to go into the army, but it’s the best we could do.
Before:
After:
Closing Thoughts
So much has changed in such a short amount of time. Hopefully things will get better soon, and we can all return to our normal lives. Until then, stay safe out there. From the news I’ve been reading, this is not something to mess with. And please say a few prayers for James and any other medically challenged kids you know that they stay healthy and don’t need to go to the hospital. That is one of the last places we want to be right now.
