F-ing Seizures!

Out of control. There is really no other way to explain it. James’ seizures have gotten completely out of control. Last Thursday evening he started having these weird twitches, which were followed by crying fits. Every three or four minutes for about half an hour. At first, we didn’t know what these twitches were, but we later thought that they might be seizures. But they were different. These weren’t his usual seizures.

The next morning (Friday) at around 4 am they started up again. The same twitches and the same crying. This time, though, it lasted almost two hours! They stopped when he got his morning seizure meds. We placed a call to his neurologist, and she told us to take him to the ER to get bloodwork done to make sure there wasn’t some sort of infection causing these new seizures. We got to the ER around 7:30 am and left around noon. The bloodwork came back fine. The only thing that showed up was a slight dehydration, which was an easy fix with some extra water flushes through his g-tube.

Saturday, he seemed back to normal, but then they started up again Sunday night. Stacy called the neuro shortly after they started, and because it was late, got the doc’s answering service. The doc called us back about 45 minutes later and instructed us to give him another dose of one of his seizure meds. Shortly after that, the twitches and crying stopped. Maybe that’s the magic pill. The doc seemed to think so and wanted us to increase the dosage going forward and see how he does. That was a week ago and he’s been doing much better. He is still having seizures here and there, but not nearly as bad as they were.

Stacy took a brief video of his twitches and crying last Friday morning and posted it on James’ Facebook page. If you watch closely, you can see his head “twitch” from side to side. The video is only about a minute long. Imagine having to watch your kid do this for thirty minutes or an hour. The morning Stacy took the video, they lasted almost two hours.

I want to end this section with some personal thoughts and advice. I am not an absent father, but sometimes I feel like I am. I wish I could be there more for Stacy and James. Stacy is James’ primary caregiver while I work—sometimes long hours—to provide for our family and for the health insurance that we desperately need for James. It sucks, but that’s just the way it is. I don’t always see what Stacy deals with on a daily basis with James, but I happened to be home throughout those seizure twitch episodes, and now I wish I could be there for her more. It’s a lot for one person to handle.

I’ll admit that she probably handled it better than I did. Maybe it’s because she’s used to it, or maybe it’s just because she has to. What other alternative does she have? She can’t just throw in the towel and give up. James depends on her.

I wish I could give her a little mini vacation away from all of this, but I know she wouldn’t take it. She just can’t be away from James that long. It’s almost as if she feels that her life’s purpose is to take care of James. And maybe it is. And maybe my life’s purpose is to support the two of them and take care of them the best that I can. Since Stacy wouldn’t be taking that mini vacation, especially with Thanksgiving coming up, I recommended that she go get a massage. It would give her a little break from James and help her relax a bit. She took me up on that and got a massage Tuesday night. If only we could afford to do that more often. Then there’s that little voice in my head asking, “how can we afford not to?”

For anyone reading this that is the spouse, or partner, or whatever, of someone who is the primary caregiver of a special needs child, make sure they take a break every once and a while. It’s important for their mental health and overall well-being. A person can only take so much before they reach their breaking point.

School

Let’s move on to something more positive. Other than the seizures, James has been healthy enough to be in school. Last week—before the seizures went crazy—they had a few of those crazy outfit days. Monday was mismatch day:

Tuesday was sports day, but we forgot to get a picture. He went in his Cubs World Series Champions shirt.

Wednesday was pajama day:

Thanksgiving

Thanksgiving was the usual: spending time with Stacy’s family and eating WAY too much! James was trying to be silly and put on a turkey hat:

So, what am I thankful for this year? I am thankful that James is still with us, but lately I have been wondering how much longer he will be. I originally thought that it would be a bout of pneumonia that would take him away from us, but lately I have been wondering if it’s going to be the seizures. It’s just not fair. How much does one little kid have to suffer? And why? What is the point of all of this?

Stacy and I are also thankful for our family and friends for all of their love and support. It makes things just a little bit easier.

And of course we are thankful for all of you, the fans of James. When we first started posting about James and his struggles, we had no idea of the impact it would make. We have been truly blessed by all of the support that we have received over the years from complete strangers, who we now consider friends. Thank you.

Other Stuff

Just a few other things to share…

Last year we went on a magical trip to the North Pole to see Santa Claus. Don’t tell James, but for Christmas this year we are giving him a replica of the train we took to get there.

In my free time—which there is not much of—I like to read. I have been on a bit of an investing and trading kick lately and am currently reading “The Mental Edge in Trading: Adapt Your Personality Traits and Control Your Emotions to Make Smarter Investments” by Jason Williams, MD. There was one part of the book that really stuck out to me and thought I would share it:

I had to reread that several times, but it actually kind of makes sense. James is considered mentally retarded and can’t enjoy life like most of us can. But on the flipside of that, he also doesn’t have the mental capacity to worry about or think about life’s problems. And there are a lot of problems in his life. If he could actually comprehend everything that was wrong with him—can’t walk, can’t talk, can’t eat by mouth, can’t suck or swallow, epilepsy—I think that would be awful. It would be torture. Knowing that you couldn’t do all of these things. Feeling trapped in this broken body.

Stacy and James went to a friend’s kid’s birthday part and one of James’ girlfriends was there. Yes, James has more than one “girlfriend”. Anyway, they were laying on the floor next to each other and this happened:

Is he too young to be such a ladies man?

There are a few more pictures I want to share, but I think I will wait until the next post. The pictures are Christmas related so it probably makes more sense to post them in December anyway, right?