We have had a difficult past month. Dray has been completely slipping down hill again from responding well to the valium. Although the effect of the valium only lasted about a week or so, it was nice to see him doing well again for that short time. Dray's side effects from the valium and keppra have been difficult. He is so jittery, can't get to sleep at night, and is just generally unable to calm down for most of the day. It is exhausting to watch him. I talked to his doctor (Joel Thompson) about switching his meds... and he wanted to see Dray's EEG that was coming up before doing so. He had his EEG on August 24th. He was such a sweetie about getting his "hat" put on. Usually he just cries and is in a panic over all of the glue and suctions being put on his head. But, now he is completely okay with it all. He sat so still like a pro and played with some toys.
Dr. Thompson called me on the 28th and said that his EEG had looked just like his first and it was time to go to steroids. So, it's disheartening, even though I basically knew what the result would be. I hate to see him on steroids. The doctor is going to have him taking them everyday (35 mg) and if he responds well we can put him on the "pulse" method of taking steroids. The "pulse" method is taking them just over the weekend on high doses. Until we can do that he needs to stay away from school because of how steroids suppresses the immune system. So, now I need to get the school district to send some in-home services to help Dray. I just hope that won't be an issue.
Dray has been doing well and working hard at his speech therapy. Every time he goes his attention span gets longer with the activities. Sign language is also coming along for him. Last night we had a pretty good conversation in sign language. Dray told me about driving a blue car with dad, and we teased back and forth about the color because it's really a black car. But, he signed most of the words and it was fun to see him communicate clearly that way and understand my signing when I asked him some questions. His neuropsychologist gave us an idea for doing picture boards with him. Which is EXACTLY what he
needs to be able to understand his schedule and surroundings... just making sense of what is happening around him. I am very excited to show him that, and I'm grateful for all the good advice we get from people around us. So nice to have such good and capable people looking after Dray and helping him.
Tomorrow he starts the steroids. We pray that his body will be able to respond quickly and that he will be able to make progress, go to school, and communicate better with us. Thanks to everyone who continues to offer help, love, and prayers for us and Dray.
Tomorrow he starts the steroids. We pray that his body will be able to respond quickly and that he will be able to make progress, go to school, and communicate better with us. Thanks to everyone who continues to offer help, love, and prayers for us and Dray.
Kerri,
ReplyDeleteYou guys are amazing! All you do for Dray. You are so right to try getting all the help you can for him right now. The younger the better.
I totally get the Holland analogy. That's totally how I feel about Caleb. We weren't expecting that he would have autism. But it came and now that's where we are. And we love all the differences about him. And we can't wait to see the inner Caleb in the next life.
Love ya!!!
Paula
Kerri,
ReplyDeleteI'm so glad you started this blog. I hope you are able to connect with other families who are going through similar things. It must be frustrating to have so few resources and to have to buck the system to get what Dray needs.
I've always thought Dray is the cutest little boy. Thinking about Dray has made me remember what it was like with Caleb when he was three and four. It's hard to watch your little ones go through trials, especially when they don't understand what is going on and they aren't able to communicate with you. I pray for your family everyday.
Love,
Stephanie