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.
Wednesday, September 29, 2010
3 more days
Sorry I haven't updated in a couple of days. It's just hard to update when things are not to good. I still continue to regress. This makes us so sad. I worked so hard to get to where I am and now I'm losing it. I am still able to sit up and I am still grabbing things. So that is great. The increase in topamax has helped my seizures. I'm not having nearly as many. Still alot but better. So things are getting a little better. I didn't get my blood work done Monday. My mom gave me my medicine so we couldn't go. It's very hard when you give medicine every day at a certain time. It throws mommy off when they say don't give meds. She said it must have happened for a reason. They are going to check everything when we go to Boston so we will just wait until then. No need to put me in pain twice right. Speaking of Boston we leave in 3 days. We are very anxious, scared, etc. Please pray for us as we prepare to go. The shirts that everyone ordered will be ready tomorrow. I will try my best to get them delivered to everyone by Friday afternoon. I may need some of you to meet me. I will let you know. I want to thank everyone at my church. You have blessed us more than you will ever know. We are so blessed to have such a great church family. We love you all!!!!