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.
Friday, June 3, 2011
Hospital Day 3
Things are not looking to great for me. I'm still having alot of seizures. The only change is the intensity of them. They are going to give me the steroid tonight and tomorrow morning. If they haven't decreased by then we will be coming home a day early. So there you go another medicine that did not work. I don't know what to do anymore. We are so tired of watching me have seizures everyday of my life. I guess we have to be thankful for the progress I'm making and pray that I will continue to develop. Maybe one day we will have some control of these horrible things. Our next step in my journey is to go to Boston at the end of the month. By that time I will be on enough lamictal to know if it is working. We will then wean vimpat and start vagabatrin when we get back. This is the medicine that can effect my eyes. I really didn't want to try this medicine but it is only fair to try it for a month and see if it will help. Please pray for me and my family!!!
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1 comment:
Hi Jadon
My name is Jenna and I came across your site. u are an amazing, courageous, strong, and determined fighter. u are a brave warrior, smilen champ, and an inspirational hero. U are a super trooper and a tough cookie. I am so sad that u have to have seizures everyday, and that there is nothing that works. I will pray that they find something that works for you, and you will always be in my thoughts and prayers.
I was born with a rare life threatening disease.
www.miraclechamp.webs.com
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