Where have I been? Not blogging...

But, I'm back at it now.... finally, I have a moment. We have been busily finishing our basement. Which is a big project in itself, but to add to it, I will be teaching ballet and fitness classes in it. So, there is much preparation, and much time taken away from me and blogging. But, it's nice to sit here and reflect on Dray. I really just love him, and as much heart ache as his life brings, I feel so much joy being able to raise him. I feel victorious when he overcomes the slightest of struggles. He humbles me, makes me more patient, more loving, more sensitive to those struggling, and this list could be endless to the amount of maturing, learning and refining I have gone through because of him. Hopefully, my family is being benefitted by my growth. Although, I am all too aware of how much more I can be doing for him, and I am definitely nowhere near to perfect.

With that being said, we are at a good place right now. He is still VERY heavy and uncomfortable and he is still not quite as chipper as he once was (still edgy and grumpier). But, he is really making gains that are awesome to see. I feel less frustration from him in every area of his life. He is learning in school so much better, communicating so much better, socializing better, and this means the world to us as a family. We went to Sacramento to see Dr. Chez again. We looked at his EEG together there, and it was awesome!! Yay!!!! So, I always ask the same question, "If we can't keep him on steroids.... how do you keep the seizures under control after he is off the steroids?" He seemed confident that with how much we have reduced his dosage and his EEG staying clear that he will be able to remain seizure free. I'll believe it when I see it, but I'm ALWAYS hopeful. He is down to 20 units (.25 ml) injection everyday and we started at 1.5 ml. We have one more week on the .25 ml and then we reduce down to that amount every other day. At that point we need another EEG. I'm reading this and realizing that I need to start scheduling that EEG NOW!! Always something. Dr. Chez was happy with how much he has changed clinically. Of course, he is nowhere near to where other kids his age are, but he is at least able to understand most of what we say to him with out using sign and have conversations with out sign. Dr. Chez says that about a year of being seizure free and we should be more able to tell what his outcome and capabilities are with his language recovery. Patience. He gave us a study he did with a supplement called L-Carnosine (1,000 mg is what he takes). In his study there was a positive change in language and autistic behaviors in children with abnormal EEG's. So, we are trying that now too.

He is doing well considering his disability and I couldn't be more grateful for that. He reads well, writes well, understands his homework, and has friendships despite it all. Not to say that these things don't have any struggles that come with it, but he is doing well and progressing. He is a very typical 5 year old and is just a delightful little boy. Sometimes a little too independent for his own good. I cannot tell you how often he just figures out how to do things on his own and doesn't need anyone's help. He just takes care of his business. He makes me laugh!!