(It’s been almost 11 months since I wrote this, and I felt that an update is in order.)
At this moment in time, life is good. So good, in fact, that sometimes it’s hard to remember how bad it was a year ago. Although I am mindful that things could change tomorrow and that there are a lot of families out there who aren’t as lucky as we are today, I’m going to gloat a bit.
The thief has received a thorough ass-kicking.
He isn’t gone, of course. He never will be. But he has made himself mighty scarce in the last few months. Oh, he pulled a stunt in May — showing up in my son’s preschool class — but fled the scene shortly thereafter.
I don’t know if a picture is worth a thousand words, but showing you my son’s journey over the last year is probably more effective than anything I can write:
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| March 2007 |
August 2007 |
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| October 2007 |
March 2008 |
When I wrote The Thief In My House, Gavin was that poor boy in the upper-right corner. Yeah, that’s really the same kid.
What’s changed?
First off, we got him off the steroids. By the first of the year he had dropped all the weight he had put on. We’re not entirely sure they helped, but when you’re grasping for straws you’ll try anything that has worked for somebody else.
Secondly, we achieved control over his Epilepsy: since late September 2007 he has had only two major (tonic-clonic) seizures. With the exception of the seizure in May (which was a result of us dropping a little too low in his medication adjustment), we haven’t seen a thing since.
I knocked on wood after typing that. When a cause-and-effect relationship is tenuous at best, superstition tends to take over. Call it bad mojo or Murphy’s Law, but his last seizure took place days after both my wife and I happily told friends that we hadn’t seen any activity in quite a while.
I’m actually wondering about the reprecussions of posting this blog entry. Neurology sometimes seems just like glorified voodoo for all it does — and doesn’t do.
The third thing that changed was that we actually got help from our local school district — that’s District 49 here in Colorado Springs. We were able to get Gavin into a preschool program, where he had individualized attention. I have been told that Colorado is near the bottom of the list for social programs, so we consider ourselves lucky.
Fourth, we continued to attend the local Epilepsy support group for kids and families. They have a website, and if you’re in Southern Colorado I encourage you to attend the next meeting. I cannot stress enough the importance of having a support group, especially if (like us) the rest of your family lives thousands of miles away.
Fifth, we prioritized. Our tolerance for drama and bullshit dropped through the floor. Once our first priority — getting Gavin stabilized — was achieved, we focused on long-term issues, such as paying off medical debt.
Sixth, we were lucky. Or blessed. Consider the following:
- Out of the blue, my wife is called by the company she left 7 years ago when she was pregnant with our oldest child. Boom, she is suddenly employed.
- After a year as a contractor with crappy benefits, I land a job with a large, stable company with great benefits and an excellent work environment.
- Gavin ends up doing so well at in the District 49 preschool program, he gets bored. At the same time my wife returns to work, we are able to get him into a Montessori preschool just blocks from our house. Within a couple of weeks, we observe Gavin’s development take off again.
- We manage to hit upon the right combination of medicines, as our options were becoming fewer and fewer.
So like I said, life is good right now. It’s possible that the other shoe could drop tomorrow: the effectiveness of medicine for kids with Doose Syndrome can change suddenly. I suppose that’s not too surprising: you’re not dealing with a bad liver (hey, don’t drink alcohol) or set of lungs (don’t smoke) but rather an organ that changes based upon what you think.
An organ that is in the body of a 5-year-old who is absorbing everything he sees, smells, hears and tastes.
Voodoo, indeed: how the hell can you baseline something that changes at the speed of thought?
This is where we are today. I’m hoping that tomorrow is much like today; there’s much to be said for boredom and normality.
