This post may end up being a bit longer than usual. I decided to skip last week’s post for several reasons. Partly because last weekend was Christmas, and partly because there would still be one week left in the year. It just didn’t make sense to me to post my usual every-two-weeks post, and then write another one this weekend to cover the final week of the year. I also thought it was a bit silly to combine the last week of 2016 with the first week of 2017. So here we are, one post covering the last three weeks of the year.

Health

Is it just me, or is it hard to believe that the year is over? At times, it felt like a really long year. But now it seems like it just flew by. Although James battled a few illnesses, he did not have any hospital stays this year, other than the overnight VEEG he had in June, but that doesn’t count. He did have one of his high heart rate episodes on Tuesday and we were prepared to go to the ER if needed, but he was back to his normal self the following morning.

I looked back at Stacy’s medical notes, and he has not been hospitalized with an illness since January of 2015. I am probably going to jinx it by saying this, but in two weeks it will be two full years since he was admitted to the hospital. Go James! Or should that be a “Go Stacy” for taking such excellent care of him? I think maybe it is a combination of the both of them.

Stacy has learned the early signs of an impending illness and knows what to do, who to call, and doesn’t “wait and see”. I can sometimes give her a little bit of a warning to be on her toes. It sounds weird, and I probably wouldn’t believe it if someone told me that they had this extra “sense”, but there are times when I know James is sick before he starts showing any signs. I’ve noticed that he has a different smell. At first, I thought that maybe he just needed a bath, and it was just a dirty smell, but as it kept happening, I realized that I am somehow able to smell his sickness. Stacy calls it my sick sense…instead of sixth sense. I know that dogs are able to sense when things aren’t right with a human, like when they are about to have a seizure. Maybe I part dog?

I think the only thing that is completely out of our control now is his seizures. They have been a lot better since the end of November when he started having a new kind of twitching seizure that would go on for hours. Our new neuro changed the dose on one of James’ seizure meds and that seems to have done the trick. He does still have seizures, but not nearly as bad as they were. The neuro has discussed putting James in one of her drug studies next year, so we’ll see if that drug helps in lessening his seizures. If not, Stacy and I received our medical cannabis cards from the state of Illinois a couple of weeks ago, so that is another option to combat these seizures.

Christmas

Have you seen those commercials where someone gets a car for Christmas? You know, a fancy new car sitting in the driveway with a bow on it. I always laugh at those commercials and wonder if people actually do that. Do people actually go out, without their wife or husband knowing, and buy a car as a Christmas gift? Well, I didn’t buy Stacy and James a new car for Christmas, but I did buy them new tires for the van. It’s kind of the same thing, right? Yeah, not really. The van did need new tires, though. Adult Christmas gifts sometimes suck, don’t they?

The week before Christmas James got a visit from another one of Santa’s helpers. There is only one real Santa, and that’s the Caring Santa that we see at the mall every year. Every other “Santa” is just one of the real Santa’s helpers.

Last year we took the most magical trip to the North Pole. I always thought that the North Pole was some mythical place where Santa lived. It wasn’t until last week that I realized that the North Pole actually exists…and I have proof:

We have family stationed at Eielson Air Force Base in Alaska, and their mail gets routed through the North Pole Post Office. Pretty cool!

A few years ago, I got a bit creative with an old traffic cone that a coworker left behind when he retired. He used it to save his parking spot so nobody else would park there. When I moved into his office, I kind of inherited it. I didn’t need, so I turned it into a little Christmas tree for James. I found a short set of Christmas lights with small bulbs, drilled holes in cone that were slightly smaller than the bulbs so that they would kind of snap in, sprayed it with two coats of primer, two coats of green paint, added the lights and some garland.

Because of James’ many disabilities buying gifts for him can be a bit of a challenge. It really comes down to stuff he can wear and things that he can see, and there’s only so many shirts and DVDs one kid needs. Stacy came up with the idea to do Christmas gifts a little bit differently this year. Instead of giving gifts to James, we asked people to give a gift that would be donated to kids at our local children’s hospital. Stacy will arrange to take the gifts to be donated to the hospital sometime after the new year.

Don’t worry, James still managed to get some books, DVDs, stuffed animals, and of course more clothes.

We’d like to send out a special thank you to those of you that made a monetary gift to James’ medical fund. We really appreciate your generosity, especially around the holiday when I am sure money is tight from buying gifts for your loved ones. The fact that you think of James (and us), well, we just don’t have the words. Thank you!

Odds n’ Ends

I have just a few miscellaneous things from the past three weeks. Let’s start with Stacy’s new job. She has her hands pretty full with the day-to-day life of James, but she has felt a bit guilty about not being able to help financially. I told her that we were doing okay and that she didn’t need to work if she didn’t want to. She then said that she had some down time when James was at school and on weekends when I was home. “True, but you could use that time to catch up on sleep, or just relax.”

One thing about Stacy…when she sets her mind to something, there is not much you can do or say to talk her out of it. A few weeks ago, she came across a company that was looking for dog walkers, so she applied, had an interview, did some shadowing, and is now out on her own. It is probably the perfect job for her. She can set her own hours, it gets her out of the house and her mind off of James, gets some exercise, and it relieves some of her stress. We have been talking about getting a dog of our own, and I think we are one step closer. We both had dogs growing up, and we miss having a dog in our lives.

Moving on…this finally happened:

James finally got his new wheelchair. He was outgrowing the old one so Stacy, being on top of everything like she is, got the ball rolling on getting a new wheelchair in February. James got fitted for the new chair in April, and it was supposed to be delivered in July. That never happened, and they kept pushing back the delivery date. It finally arrived on December 15^th, which makes me wonder. It’s been 8 months since he was first fitted for the wheelchair. I’m pretty sure he has grown since then. How much use are we going to actually get out of it before he is going to need another one?

Now that he has his new wheelchair with the additional side support, he no longer needs to sit in his car seat in the van. We can wheel him into the van, strap his wheelchair down, and go. Now when we go places as a family, one of us can drive, and one of us can sit next to James. It used to be one of us driving, James in his car seat behind the driver, and one of us in the far back seat so that we could give James suctioning if he needed it. I do feel a bit like a chauffeur with this new arrangement, though.

And the last odds and ends is James’ new wall art in his bedroom. The “no more monkeys jumping on the bed” stickers have been there for years. The James Jackson signs are new. Stacy bought them through Thirty-One.

Unfortunately, it doesn’t sound like they offer these signs to customers, but you can order them as pillows. If you have an interest in making a pillow or two like this, reach out to Stacy at her Tote-ally Stacy Facebook page.

Happy New Year

As I conclude this last post of the year, I (we) want to thank all of you who have been following James’ story, supported us, or shared some words of encouragement. I say this often…it hasn’t been an easy road, but you make it a little bit easier. Best wishes to all of you in the New Year.