Celebrating major milestones

Posted on September 10, 2015 by jeffcuz

It was more than a 13th birthday party at J.P.’s house over the weekend.

I’m not saying that the very fact that J.P. turned 13 wasn’t reason enough to celebrate, but this party felt different than some others.

We began the week at Florida Hospital for Children for a 48-hour EEG study, and that’s when we began to wonder if we would even be home in time for the party.

J.P. has had some times this year when he appears to be very uncomfortable — almost like he’s going to explode. We first believed it was gastrointestinal in nature, but we later learned it was neurological, actually a seizure.

He has seemed over the past few months to have more of these episodes, and it was becoming an almost daily occurrence. That’s when we decided we needed to do something about it.

There were other symptoms that went along with it, including an unexplained increase in weight.

J.P.’s neurologist ended up pulling the trigger and ordering the EEG, and on this admission, we found out the exploding thing didn’t correlate with a seizure. We ended up trying a stronger reflux medication to see if that would help.

We’ll follow up with the neurologist this week for a further review of his symptoms and talk more in-depth about what to do next.

Anyway, the party on J.P.’s birthday was, of course, special. I still recall the doctors cautioning us that he probably would never see his teenage years. While we always seem to be dealing with something when it comes to his health, his first 13 years have gone pretty well.

I was telling someone earlier this week that among my biggest fears when thinking about having a special-needs child was that many I’ve seen always seem to be unhappy or unaware of what’s happening around them. J.P. is anything but that.

I believe J.P. would tell us that his life is a joy, and he’s always aware of what’s going on around him and trying to engage the people he sees.

He has opened my eyes to many things, especially that those who have differing needs than us typical folk are there and likely know more than we give them credit for.

It’s something to think about moving forward as we continue to try to do our best to keep that smile on my little teenager’s face.

Onward.