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.
Saturday, October 15, 2011
The title explains how we are feeling right now. I'm on day 3 of my final medicine increase and I'm still having seizures. My mommy has talked to my neurologist in Boston. He is in the process of talking with the neurologist in Detroit. He will then get in touch with my mommy and let her know his opinion on the surgery. I have 3 neurologist and we want them all to agree with the surgery. I know it's seems crazy that we are being so cautious. Most people say go ahead with the surgery if it could stop the seizures. Well easier said than done. You see it is a very dangerous surgery. On top of that they can't tell us that it will definitely stop the seizures. They are pretty sure it will but can't be 100%. You also run the risk of taking something out that I'm using which means I would regress or even lose function of my right hand. If I do regress they are hopeful that I will regain the skills. It's just alot to consider and it makes us sick at our stomach everytime we think about it. We are spending lots of time praying right now. I have to be honest and tell you it's hard to not be mad at God right now. Why do I have to suffer? Why doesn't the medicine help? Why are we in this situation? Why is it that my family has done everything possible and can't get me any relief? We have to sit down and think about how far God has brought us and how He has never left us through this all. My mom and dad will never forget the day the neuro in Detroit walked in and said wow he is very high functioning considering his situation. This tells us God is with us even though we don't understand why I'm having to go through this. Please continue to pray for me and my family. It's very hard for my mommy to have to leave me for work right now and she is having a hard time. Also pray for the decisions we are having to make. Keep praying for these seizures to stop. We know that even though the medicine isn't working God can still heal me. We are continuing to trust God as I continue to fight this battle. Love you all, Jadon