Bye Bye Clobazam

Dear Jakey,

As I write this you lay next to me sleeping. You look so grown up to me - maybe it is just the haircut but I am feeling so proud of you tonight. While you were still at school today, Mommy and Daddy met with all your therapists at Prospect. Everyone has noticed such a change in you and how you are so much more alert and awake. It was a great meeting and next week I am going to start working with Stephanie, Heather and Beth to feed you lunch there. I am pretty nervous but also so excited. Mostly excited for you so that you don't have to be so dependent on me to eat and you can stay for the full day of school some days. More time to hang out with Logan and Zander. After school today you had Xavier and Karen - a busier than usual Monday and I was sure you would sleep all through Karen but you didn't. You worked so hard today. I am so proud of you my guy.

Well I know you have always had it in you to be more alert and more of a participant in your own life. I recognize all thsi greatness and know it is coming back to you because we are stopping clobazam. This Thursday (3 more sleeps as Ethan would say) will mark your very last night of clobazam ever. It is so exciting when we stop a med and just know it is the right thing. It is so hard to believe you were on it for 3 and 1/2 years - I remember like it was yesterday when you started on it. It was the first drug out of something like 13 that made you stop moving. Back in those days you twitched and moved nonstop - Clobazam gave you 12 minutes of peace that very first day and I am grateful for all it did for you back then. You are stronger and more stable now and don't need it anymore and I am most grateful for that.

Sleep well my little buddy - we have a big day tomorrow.

Love,
Mommy