End of Epilepsy Awareness Month
As we close out Epilepsy Awareness Month, I want to thank you for taking the time to read through the Epilepsy Awareness Month: Days 1 – 15 and Epilepsy Awareness Month: Days 16 – 30 (which will be posted tomorrow) posts. If you haven’t read them, I encourage you to do so. They are pretty quick reads and have quite a few interesting facts about epilepsy.
Unfortunately, Stacy and I are aware of epilepsy more than just one month out of the year. We are aware of it on a daily basis. This past Monday is a good example. James got up around 2:30 am. Unlike me, Stacy is a light sleeper and heard him making noise and got up to tend to him. She gave him some suctioning to clear the secretions out of his nose and throat, changed his diaper, rubbed some of those essential oils that promote sleep on him, and added some other oils to his diffuser. She laid with him for about an hour, rubbing his back, until he finally started to calm down. For that entire hour, she felt him have seizure after seizure. There wasn’t a damn thing she could do about them except lay there and comfort him. Our mission is to find something—anything—that will take these stupid things away from him.
Stacy is the primary admin on James’ Facebook page and does most of the posting there. She was debating if she wanted to post a video she took of an infantile spasm episode James had when he was a baby, or if people may find it too disturbing. (Infantile spasms are a type of epilepsy and was our introduction to this horrible disease.) She decided to post it on his page because it is Epilepsy Awareness Month and people should be aware of what they look like. Instead of redirecting you to his page to watch the video, I have uploaded it to YouTube so that I could embed it below.
A couple of notes about this video…
As I mentioned, this video was taken when he was just a baby when we were trying to figure out why he was doing this. The doctors originally thought that it was acid reflux. It wasn’t. It took doctors several months to diagnose this as infantile spasms, which is a type of epilepsy that occurs in children under one year old. I should probably warn you that the video may be a bit hard to watch, so watch at your own discretion.
Pretty hard to watch, huh? Now just imagine that was your child or loved one and there was nothing you could do to stop them. That’s the way it was for Stacy and I. We spent months trying to figure out what these things were and had to sit there and watch James suffer through them while we waited for the diagnosis.
Our advice to you…if you see your child or loved one doing something like this, take a video if possible, and schedule an appointment with a pediatric neurologist. Show him or her the video. They will probably want to do some testing for an official diagnosis, but once you have the diagnosis, they can start treatments.
In other epilepsy news…Stacy thought it would be nice to buy cupcakes and notepads for James’ teachers and nurse at school. Purple is the color of epilepsy.
Remembering Jackson
On November 17, 2008, we said goodbye to our first son, Jackson. After he was diagnosed with Trisomy 18, we knew that the chances were slim that he would make it through the pregnancy. We will always consider him our first child—even though he was never born—and big brother to James. This was the note that we shared with our friends and family shortly after his passing.
Although he was never “born”, we always consider November 17th as his birthday. He may not have been born into this world, but we believe he was born with his angel wings and went straight to heaven. He’s up there somewhere looking down on all of us.
Random Pictures
I don’t like to end a post on a sad note, so here are a couple of random pictures from last weekend…
This is what happens in our house when it’s cold and snowy outside and we get bored:
I miss the days when James was smaller, and it was easier to have him rest on my shoulder. I sadly think those days are coming to an end. He’s getting a little bit too big for this:
