On A Mission To Find Jayden

The past couple of months have been really tough. Jayden who 6 months ago could sit on his own for up to 5 minutes has lost that skill. Six months ago he had great head control but doesn' t now. I have the video to prove it! I have been racking my brain trying to figure out what I can do to help him. He has the most caring therapists who continue to work with him even though it must be frustrating to see him regress. When I approached his doctors with my concerns they assured me that since he had grown so much since his VNS surgery he was probably having a hard time adjusting to his size. Well another month has gone by and really there aren't any changes. I have been so frustrated! Going to therapy nearly brings me to tears because I know he is capable of doing so much more. Last Friday I took Jayden to UCSF to talk about adjusting his VNS. We thought he might be having some side effects. Jayden's VNS is now programmed to stimulate his brain every 3 minutes instead of 5 minutes. After talking to Hutch we decided to start taking him off some of his meds. Before he was taking such a high dose of his tranxene he was doing much better with his motor skills. I am both scared and excited at the same time to see what happens. I am hopefull that the VNS will do it's job and we can get rid of these meds that are drugging my little boy and making him loose his cute personality. I am so sick of hearing people tell me how tired he looks. He's not tired! He's drugged! Today was his last day on Ativan YIPPEEEE!!!! My goal is for Jayden to only have to take his Keppra! The best thing about that is Keppra has the least amount of side effects in comparison with meds he has been on in the past. So keep your fingers crossed and say an extra prayers for my little man. We couldn't have made it through the last two years without all of your prayers and support. Thank you from the bottem of our hearts.

love,

Brandy