Halloween

What was James for Halloween this year? If you read my last post, you got a little sneak peak, but before I show you the full costume, let’s take a look back at his previous Halloween costumes.

This year he was a doctor. His one-on-one nurse at school had given Stacy a pair of her old scrubs, which Stacy then modified to make them more James’ size:

She even managed to make a cap out of the left-over fabric. Add a stethoscope and a name badge, and I introduce you to Dr. James :

Stacy even bought her own scrubs and became Dr. James’ nurse/assistant for the day. She is in the solid black top in the upper righthand picture above. James’ one-on-one nurse is on the left.

Back at home, Stacy and James decorated a pumpkin to display in front of our house. They painted it purple for Epilepsy and added a green ribbon for cerebral palsy.

Epilepsy Awareness Month

November is Epilepsy Awareness Month. Stacy made the wreath in the above picture for one of her Stacy Rae Creations customers to display on their front door for the month.

Unfortunately, epilepsy is something that we have been battling with as a family since James was in the NICU. Of all James’ medical issues—the cerebral palsy, the tube feeding, the vision and hearing issues, the epilepsy—epilepsy is the one thing that we really wish we could cure him of. And believe me we have tried.

Shortly after he came home from the NICU, he was diagnosed with infantile spasms (IS), which is a form of epilepsy. We tried the ACTH injections, which is supposed to be the best treatment for IS and which were so expensive that we had to fight with our insurance company to get them to pay for them. Unfortunately, they didn’t work.

I think we’ve tried every antiseizure med—and combination of meds—there is. We’ve tried the ketogenic diet. Some things seemed to work, but right when we thought we found a cure to his seizures, they came roaring back.

Here is a picture of James from his first 36-hour video EEG (VEEG) in May of 2012. This was taken right after they had put all of the electrodes on his head and before they wrapped his head with gauze to help keep the electrodes in place.

During that VEEG, they noticed some crazy spikes and decided to drug him to calm his brain down. He was in a drug haze for three days after that.

We’ve gone so far as to talk with a few doctors and surgeons about the possibility of brain surgery to remove the part of the brain that the seizures are coming from. Unfortunately, the tests showed that they were coming from all over the brain, so surgery was not an option.

We really started to think that was it. We tried everything we could. The only other option we saw was packing up and moving to Colorado to see if medical marijuana would finally cure him of these damn things. But that would mean leaving our families, friends, and all of James’ doctors behind.

Then we found out about Vagus Nerve Stimulation (VNS) and how it has shown some pretty positive results at controlling or eliminating seizures. We decided to go for it and in September of 2012 he went in for surgery to have it put in. To find out more about the VNS and the surgery, please read the VNS Surgery post.

We really thought the VNS was the cure we spent so long looking for. It really did get his seizures under control. They weren’t totally gone, but they were a lot more manageable than they had been prior. Stacy and I were struggling to remember the last time we saw James having a seizure.

Something changed recently, though. We’re not sure what is going on, but this past month or so has been pretty bad. Here is a video that we took on Thursday. During his seizures, his right hand goes up by his head, his left arm goes out to the side, and he arches his back.

While the VNS normally does a good job on its own, it also comes with a magnet that we can use to force the VNS to give James’ brain a little extra pulse that will stop a seizure. We chose not to use the magnet while filming the above video because we wanted to show the neurologist how bad they have gotten.

I guess this is just a really long-winded way of saying that we hate epilepsy. Because this is Epilepsy Awareness Month, I want to encourage you to check out The Epilepsy Foundation’s website and learn more about it. And please say a prayer for James, and anyone you know that suffers from this horrible disorder.

UPDATE: James is scheduled to have a home and school VEEG from December 2nd to the 4th. Hopefully we will be able to figure out what is going on in his brain and what our next steps will be.

School

We got James’ school pictures in the mail about two weeks ago, and we weren’t too happy with how they turned out.

His head tends to turn to the left and rest against the headrest on his wheelchair. Instead of turning the wheelchair so that he was facing the camera, we think they tried to just turn his head and ended up propping his ear against the headrest.

Yes, he is looking towards the camera, but look at his left ear! If I was a professional photographer, I would not have found this acceptable, would you? Fortunately, he was able to retake his pictures this week. Hopefully these will turn out better.

I love the fact that include James in many of the activities he can’t normally do. The picture below from gym class is a good example. James obviously can’t crawl through the tunnel on the floor, so to help him experience what it’s like to be in the tunnel, they put it over his head.

Wedding

We took a little trip out of town for a wedding from Thursday to Saturday. The wedding was on Friday night, which worked out well for us because one of James’ cousins was having a birthday party on Saturday. We clean up pretty well, don’t we?

I am still madly in love with Stacy. It’s been a rough road these past few years, but there is nobody I’d rather be on this journey with.