So, since it's been so long, I think I'll just do a quick update for now.
Reese is doing pretty well. In certain areas anyway. He is healthy, growing like a weed, and active. I bet the poor kid wishes he was mobile. He likes to move and kick and toss and turn. He'd probably run a mile a minute if he could.
Our biggest hassle is his seizures. He has had daily seizures since about the end of June of 2012. That means the poor kid has gone for over two years now - having daily seizures. Sometimes a lot of times during the day, sometimes when we're lucky, just one.
We're on medication number 8, and so far no relief from seizures. We've tried a lot of different combinations, and some of them just seperately, but nothing seems to be helping much. We've found that he has paradoxical reactions to any benzodiazepine type medication. That's a fancy way of saying he reacts oppositely to the medication as how it is intended to affect a person. That is a problem because a big portion of anti-epileptic medications fall into the benzo family.
We're hoping very soon - within the next 6 weeks to be able to start him on a cannibis oil. The cannibis oil has shown incredible reduction of seizures in most who have tried it. But with it being considered an illegal drug and all .... well it took some time to get it pushed through state legislation so it would be legal for us to try. The down side of it is, it's quite expensive. But hopefully if it works we'll be able to find a way to keep him on it.
Reese got a g-tube (a tube that is surgically put right into the stomach from the abdomen) and it has been wonderful for him! He is able to eat pureed foods orally, but gets all of his liquids,including medications, through his tube. It has been a lifesaver. He was choking and aspirating anything below about a honey consistency. He's had it for a year and half now and it has truly been one of the best medical decisions we made for him.
He gets to start pre-school for two days a week in the fall. I am excited for him as I think he will really like the social interaction and being around other kids. I hope it works out well and he's able to maintain good health and minimal seizures so he can go.
Right now we're just plodding along in life (and I mean that in as a good thing). Sometimes I try to map out and plan a future that I'm unsure of, but I do it anyway. And other times I just take it one day at a time and don't even worry about what tomorrow will bring.
We'll see if I can keep up a little better on the blog front. TTFN y'all.
