I’m not sure if it’s the upcoming tests that Stryder has or if it’s anxiousness about his genetic appointment yesterday, but I’m feeling sad tonight. Stryder’s epilepsy seems to be okay right now. He is still having seizures, but his speech has not been declining, at least not every day and he seems to be doing great at school. I really should be feeling happy about where he is, but I’m scared, worried…
As you know, or not, Stryder has a Wish trip coming up to go to Disney and we got the call the other day it was approved so we go to tell him. He SAYS he is excited, but he doesn’t show any emotion. This happens all the time and today when we told him, his sister said that it’s embarrassing to her when her friends come to him with excitement about something and he just doesn’t show anything. I realize more and more, he is not “typical” and it hurts more and more, the older he gets, the more I hope he is getting better and will be just like all the other little 5 year olds. It saddens me when I can see something is wrong and I know it’s the seizures that are destroying his processing. The neurologist is surprised he is not more cognitively damaged because his awake waves are very slow. Maybe this is what the end result of those slow waves are? I don’t know but I want it fixed. I want him to be able to express happiness when we tell him something good, no matter how big or how little.
Other times, Stryder does not respond when he doesn’t understand what someone is saying. Some take it personally and I wonder if this is something that can change, or something we have to just accept and WE make the changes, we change the wording so he understands. The EEG’s and MRI’s show he has damage, so do we just leave it at that, or keep trying but with trying is frustration for not only me, but Stryder. I don’t know that we will have the answers, and I’m not looking for them, but I’m sure many people will have their own opinions. He seems so normal in so many ways, but then there are things that come up, reminding us that he has so many struggles. He smiles everyday and acts as though nothing is wrong. Do I tell people ahead of time, or do I just ignore it?
Like I said in the opening, Stryder has a date for his MRA. He will be going October 17th. It will be several hours and he will be under general anesthesia. That in itself is scary, but also what they may find. We have done scans on both his heart and brain and both were abnormal. We have to assume something will show up. I know others can’t believe a doctor would say such a thing, but in my case, I would rather know that than be blind-sided like we were when we found out that he had a dilated aorta and not just a small dilation along with a hole and shunt. I’m anxious and nervous at the same time. I want to know what’s going on, but scared that we will find more, which leads to the genetic appointment yesterday.
Stryder’s genetic testing came back with 56 mutations where 16 are unknown variance. There were 8 types of muscular dystrophy, most involving the heart and the brain and several other mutations involving the heart. Our job is to weed them out and figure out which he is just a carrier for and which he really has and it’s very daunting going through them and seeing that he fits most of them. It helps to help go through it all and I enjoy the research as it keeps my mind busy, but it also reminds me that there is a lot wrong!