I wanted to be more organized about my posts and lay out different things I'm thinking about or trying, both to help me organize my thoughts, but also so that it might be of help to others who stumble on this blog. However, I feel a need tonight to just unburden and perhaps even complain a bit. It's ironic really because Brendan is actually doing quite well these days. He's still having an average of about 8 (micro) seizures a day, but almost half of those are while falling asleep (which hardly seem to bother him) and a good portion of the others are in the car seat while in the car (where at least he's safe and secure). That's actually what got me started tonight, searching on the internet for anyone else who has noticed this correlation between seizures while riding in the car seat, or any possible explanation of why that may be. Well, it's nearly two hours later and I've been jumping from forum to forum, googling new ideas or things that have worked for some people. So, that's what I'm complaining about tonight: the pure time that this disorder has taken from my life. It's amazing. I probably average between one and two hours on the internet researching each day. Then there is the additional time making notes about when the seizures occurred, what Brendan has eaten, how much he slept, etc. while searching for clues as to his triggers and tracking his progress. And every time I start complaining I realize how blessed we are in our current situation that Brendan is still developmentally on track and happy and healthy in every other way. All I have to do is spend a few minutes on the forums and have my heart break reading stories of children that will never be the same and never be able to experience the joys and freedoms that my son has. I do appreciate that...fully...every day.
It is funny that it's on the good days, or weeks, that I start to pick up my head and look around and realize exactly how focused on him and worried I have been for weeks on end. The world suddenly seems brighter and easier and just lovely. I've started to grow cautious at these peaks though, because I never fail to start imagining how Brendan will continue to improve and improve until the seizures are a thing of the past.....and then it hits me hard when it doesn't happen quite that way. I've got to work on being optimistic without setting myself up for disappointment. I do feel that I've reached a better place in the past few weeks though, I've made a few major decisions about how to proceed with his medications, etc. and I'm ready to try new things in a methodical way that just overwhelmed me before. Our new step that seems to be working so far is adding 100mg of B6 each day, and starting to cut back on carbs. I'm not ready to jump into any strict diet, although I'm starting to eye the Modified Atkins Diet (MAD), for now it's enough to de-emphasize the carbs and make sure that we have plenty of other options to offer Brendan when he's hungry. Next up we tackle his milk and cold cereal breakfast habit and try to convince him on eggs and breakfast sausages. I actually think that it wont take too much convincing, it's more a matter of dragging myself out of bed early enough to cook so that it's ready when he wakes up and he doesn't have to wait for it.
Baby steps....but we're getting there....and it feels good.
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