Nan's Blog

Well, I finally got up the gusto to e-mail Dr. Kilroy at Vanderbilt to see if I could get the ball moving yet again so we can learn more about Matthew's condition. I don't want to be rude and a bother, but geesh, you'd think I'd get some answers sometime or another. I have to step into my role as Matthew's advocate, and people don't always like that. Anyway, my e-mail was very nice and polite and included questions that I have been wollering around in my head since the last time I talked to the neurologist. (Dr. Kilroy) Questions included...will he still be diagnosed with autism or will that change, could this cause him pain of any kind, could it cause him future problems with health or longevity (I know, only the Lord knows the answer to that one, but I still had to ask just to for the sake of asking), any possible causes, could it be a reaction to vaccinations, has this occurred in others? I know that's a lot and I don't expect him to have all the answers, but as Matthew's mom, these questions and many others have swarmed in my head long enough, and it's time to let somebody else stew on 'em for a while. I hope that my e-mail will get me the letter of results soon, and hopefully he will talk to the other radiologists like he said he would. It's so frustrating not knowing what exactly we are dealing with. If it was point-blank autism, we would deal with it. If it was point-blank mental retardation, we would deal with it. I just want to know what we are working with, in order to understand as much as I can. Since Jacob is getting older (and I know the questions are coming) I want to be able to explain to him as best as his little mind can understand, what Bubba's condition is. (Kinda hard to do that when I don't know myself.) Jacob is SO good with Matthew MOST of the time. He's better at understanding at times than a lot of adults. I know he knows Matthew is different than he is, but he doesn't question about it often. He has asked a few times why Bubba does certain things, but he usually says things with such optimisms as "WHEN Bubba learns to talk like me" instead of IF. "WHEN Bubba plays like me." I have come to accept that Matthew MAY (I caught myself typing will) never have the 'typical' life of a child, but we could all benefit from looking at things a little more like Jacob. After all, if we say never, where's his chance? ♥