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We have begun another round of various testing for Maddy at the Mayo Clinic in Rochester. We've already had few appointments for various consults. So far we've learned not a whole lot. The tests with the most potential to yield some answers are still coming up.
We are scheduled for a neuropsychology appointment next week. I'm not entirely sure what all to expect with this one. I was told it can go all day or it could only take half a day. I do know it will involve several cognitive type tests as well as ADOS (an autism diagnostic tool).
We are also scheduled for a consultation to discuss doing gene mapping of some kind. At this point, all of Maddy's test have been normal. Gene Mapping may provide an answer, it may not. In fact, the geneticist told us that the chances of such testing turning up anything is most likely around 20%. Not very high hopes. He did however, state that if we are thinking about more children, it could tell us whether Dave and I are likely to pass something similar (if it is a genetic issue) onto another child.
I have a lot of mixed feelings about this topic. On the one hand, I do want another child. On the other hand, it is a little scary with not knowing Maddy's future. I can't say with any certainty that she will become "normal" (whatever that means.) I can't say with any certainty that Maddy will one day be able to live independently. I know that that's a long way off. Maddy is only four and there is a long time before that will be something that needs addressing. But all of those decisions come into play when thinking about another child. It's not a decision I'm ready to make right now. I went back and forth on whether or not I wanted to share thoughts on this topic. But I feel its a topic that doesn't get addressed very often, and because it is such a very personal decision for a family to make. I mostly wanted to share these feelings to let others know that it is okay to feel that way. It's okay to not know the answer and it's okay go back and forth on what the answer should or could be.
I will be keeping everyone updated as the testing goes. I am hopeful that maybe we might know something (anything) very soon.
