Jadon’s Story: Goodbye Banzel
Posted: 24 Jul 2011 08:51 AM PDT
I’ve been doing really well since my last post. I have been on a banzel wean for a long time now. We stopped the wean for a few weeks because we thought it was increasing my seizures but it really wasn’t. I just have my good days and bad. I took my last dose two days ago. We haven’t noticed much increase in seizures. I may be having about 10 more or so a day but not enough to stay on the banzel. The banzel has been the only medicine that has ever worked for me. I started it last October when I was having over 200 spasms. It decreased them to about 90. That is actually the number we have been stuck on ever since then. Yes they go up and then they go down but on a normal basis I’m having about 90 a day. We just assumed it was the banzel still but we were wrong. I’m totally off of it and we haven’t noticed any change in seizures. We go back to the neurologist in New Orleans in September. She will then start the vimpat wean. The only two medications I’m on right now is vimpat and lamictal. We are ready to get me off the vimpat because we haven’t seen any change since we started this medicine. I’m only on 15mg of lamictal. We are stuck at that number due to the medication reaction that I had. We will start trying to increase it a little slower August 1. If I break out again we will stop it all together. Right now I’m on the least amount of medication that I’ve ever been on and guess what, I’m progressing more than ever right now. We always thought that the medicines were slowing my progress down and now we know for sure that they are. I don’t think we will ever understand the medication thing. The only thing that explains everything is our faith and prayers. We believe that God is watching out for me and helping me fight this battle. Which leads me to what I’ve been doing this past week. I’ve been talking, talking, talking. I’ve been able to say bye, bye, da da, and ma ma for awhile now but only when I want to. I never would mimic you. Which in speech therapy is a problem. In fact my speech therapist decreased my time because I wasn’t progressing. I know it doesn’t make much sense, but it’s an early steps rule. Please don’t get me wrong, we love our speech therapist. She has gone above and beyond for us. That’s why I’m glad to say that I’ve done nothing but progress in the speech area this week. I’m mimicking everything. I mean everything. My brother’s laugh, my brother’s screaming, ma ma, da da, bye bye, vowels sounds, and hand movements. My mommy and daddy are so proud of me. I get super excited when I mimic them. I’ve been trying for so long and I finally got it. I’m also getting up on my knees and rocking, rocking, rocking. Mommy thinks I’m going to take off any day now. Other than that I’ve been having lots of fun this week. My Paw and Mar took me camping. We had lots of fun. My mommy and Shelby took me down the water slide at the campground. It was so much fun. I would start kicking my feet and laughing when we started to go again. I left you a picture of my mommy and I coming down the slide. Just look at that smile on my face. I also loved splashing in the water at the splash park. I sat and played with my Mar and my brother for a long time in the water. The second picture is of me splashing at the splash park. So as you can see I’ve been very busy this past week. I leave next Sunday for Boston. We are getting really nervous about this so please pray for us. We really want these seizures to stop. I don’t know what it’s like to go a day without seizures. Everyday my brain is attacked by this horrible monster. Even though I’m attacked daily, I continue to stay strong, to fight, and to progress more than expected. Thanks everyone for praying for me. Your prayers are the reason I’m doing so well. I love each and everyone of you dearly for the support that you give me.
Momma (and I) didn’t get any sleep last night. Pray this changes tonight.
Fredrick Allen Lea was born March 10, 1957 and passed away on Tuesday, July 19, 2011 at North Oaks Regional Medical Center, Hammond. He was 54 and a resident of Kentwood.
Fredrick is survived by 3 brothers, Charles E. “Dup’s” Dupont, Glenmora, LA, Eugene Ganson, Dazetta, TX, Billy J. Dupont, Bergland, MI; sister, Carolyn S. Mercier, Tylertown, MS; numerous cousins and extended family members.
Preceded in death by his parents, Johnny & Ilamae Lea; brother, John Williams Lea.
Visitation at McKneely & Vaughn Funeral Home, Amite, on Tuesday,, July 26, 2011 from 10:00 a.m. until Celebration of Life Services at 12:00 Noon in the funeral home Chapel with Rev. Michael Shumock officiating. Interment in Hyde Cemetery, Chesbrough, LA.
An on-line Guestbook is available at www.mckneelyvaughnfh.com