Progress update

Dray's progress has been slow, actually non-existent, I should say. He has really taken a huge nose dive in his ability to speak. He has moments where he talks very clear and I have some hope. But, most of the time it is either jibberish, repeating the same word or phrase, or just out of breath from trying to say a word or phrase. When he goes through these periods of regression he sounds like a deaf child when he talks. It's crazy how much things can change when he is in a better phase. I feel like I'm going crazy trying to be patient with him because I cannot even imagine how difficult this must be for him, but I feel so frustrated. He tries so hard to talk. I don't want him to not try, so I can't let it show how painful it is for me to hear him talk like he does. It does bring me to tears just listening to how strange he sounds and how awkward all of his words come out. I just know and remember him so differently and I'm finding it difficult to reconcile the two different Drays.

We took him swimming yesterday. He went off the diving board with all of the big kids. He ran and took a big jump off the edge. Everyone watching was amazed and kept asking us how old he was because he could swim so well by himself. He has definitely put his efforts into physical things that he can learn visually. He excels and becomes a whole new child in these activities. We love to find things that he can find confidence and happiness doing.

He is still on the same dose of steroids (prednisone). I talked to Dr. Thompson about his progress yesterday and he assured me that I needed to give it more time. He probably gets tired of over anxious parents that want results right away. It's not so much me wanting results as it is that I don't want to waste valuable time on meds that don't work!! Today I started his picture board for his schedule. He has really taken to it and puts in his own things for his schedule. Like tonight after his dinner picture he put in the trampoline picture. So, we let him go out and jump before bath time. It's fun to see him understanding orders of things and what's coming next. It gives him a sense of confidence in his ability to make decisions and in what's going on in his crazy world. I hope my next entry will be about how I am seeing progress in him. I will say he is staying happy and that is all I can ask for at this point. He is laughing and smiling. His teachers at school just adore him for his sweet temperament. Today was his last day, because we are having home services now. Dray and his bus driver have become quite close in just a few days. Dray looks at him adoringly and the bus driver just adores him right back. They gave each other a big hug good-bye today. It was very sweet.