Dray did have another EEG on the 28th of July to see how he responded to the 3rd IV steroid treatment. His EEG did not look good and has basically gone back to the way it was. For some reason I'm okay with this. I think because he seems to be doing so much better than he was. He is talking better, responding better, playing better, learning better, and he's always making progress. The progress is slow, but he is always gaining skills that help him with his disability. Even on bad days when he can't understand or talk as well, his signing is so good now that we can have good conversations and I can explain everything to him and he can do that for us. It's really been in the past few weeks that I feel like he's going to be okay. I know he has a disability and recognize he needs a lot of help and interventions, but I really feel like his intelligence is intact enough that he will someday be able to put all the pieces together and have it work out.
What to do now? That's a good question... I have no idea!! Dr. Thompson has officially retired as of Aug 1, sad for us. Dr. VanOrman has taken over. He has always read Dray's EEG's in the past and I have met with him before on a few occasions to discuss Dray's treatment, so I feel comfortable with him knowing Dray and his situation. He has given several suggestions to think about and I really don't know what to do. One suggestion is to go the Mayo Clinic. Kelly, if you are reading this I need to talk to you about the doctor you suggested in California. That seems like a possibility. We talked about more seizure drugs, depakote, to be exact. Maybe even surgery. Which, we talked to the surgeon already in Chicago about. We just need to follow up with more EEG's that he needs to see. I just feel directionless right now. So, then Dr. VanOrman said that we might consider that Dray is doing much better than he was before and we know that someday this will stop and maybe we shouldn't pursue another direction. Just keep him on the pulse steroids and ethosuximide until this ends one day. So, maybe I should run a poll, and whatever wins that's what we'll do. Kidding. But, I do feel like anything we do is a shot in the dark. I don't feel strongly about any one direction. I feel conflicted in any choice, actually. I won't bore you with my inner dialogue on the pros and cons of each choice I face. So, that is where it stands for now. My last phone conversation with Dr. Thompson was really great. I was having a tough week and told him that I had to know that either he was doomed or that he would come out of this. He flat out said that Dray will be okay; there will be language restoration at some point, although he can't say when. But, he has dealt with this more than any other person I know and he is confident that Dray will be fine and that in his experience with this condition, the kids have turned out much better than the literature suggests. So, to get to the point now,when I do make another decision I will post again!
FYI: Dray's school for kindergarten next year has been decided on. He will go to a private school, Kids' Village. They have an ASL class for him, and the class size will be right. The curriculum will be challenging for him, but the learning is more hands on. Perfect for him in every way!! What a blessing!!
