Jadon's Infantile Spasms Story
I created this blog so that our friends and family will be able to follow Jadon as he fights to overcome Infantile Spasms. I also hope that if anyone else is going through this, they will find this site helpful. I have posted a video of what infantile spasms look like, as well as everything we are going through. I hope by posting this I am able to get help for other children who are having these spasms. The earlier this is diagnosed the better. Feel free to leave me comments. I love to hear from you. If you have any questions just email my mommy. She likes to help people in any way she can.
Monday, January 9, 2012
Well the results are not really what we wanted but I think I can write this blog. Ok so my seizures are originating in my motor cortex as well as all over the left side of my brain. They came in and told us that the motor cortex was involved and wanted our opinion before they went into conference. They originally told us they would come back with multiple surgery options. Well they only gave us one option. If we want these seizures to stop I will need a complete hemispherectomy which includes removal of my motor cortex. We were trying to leave the motor cortex alone. So what does this mean? Well it means that I will have permanent motor delays on the right side of my body. I will not have much fine motor skills with my right hand. I will have gross motor skills but no fine motor. The doctors are not real concerned about this because I already do not have much fine motor skills with my right hand. Basically the seizures have already damaged my motor cortex which explains why I already have right sided weakness. He said I will learn to walk, run, and play as any other kid would. You know I believe things happen for a reason and if any of you knew my great grandpa you remember he lost one of his arms in a car accident. This was a reminder today that loss of some function in my right arm is better than all these seizures. The other news that wasn't so great was that there is a small area of malformation on my right side. We have known this, this is nothing new. So why is it so important now. Well because of this they do not know if I will be totally seizure free after my surgery. I may still have 2-3 seizures a week. We do know that my EEG from Boston did show 3 possible right sided seizures during my last EEG study. With that said, I am currently having 1400 visible left sided seizures a week. That does not count the constant spiking that is going on in my brain. The EEG that is being done right now has been active since I got out of surgery Thursday. What that means is my poor little brain is never resting. Again its so bad its amazing that I'm doing so well now. The doctors said that by removing my left hemisphere my outlook in life is much better even if I do have a few seizures a week. You see if we don't do it my seizures are going to continue to get worse and worse. We are looking at a life in and out of the hospital and my life expectancy goes way down. So no they didn't give us more than 1 option but I believe its because God had already made the decision for us. He knew we wouldn't be able to make it so He made it for us. It's like the doctor told us today. We either do nothing or we give him his 1 chance of a better life. Please pray for me tomorrow. I know you all will but this is so hard on me and my family. My surgery will begin around 8:30(7:30) your time tomorrow. We are trusting in God, that's all we can do. We are praying that I'm having my last seizures today and that we will never see another seizure again. God be with us!!!