We made it half way through my topamax wean. I'm still doing great. My seizures haven't increased at all. In fact, they are still very mild and very few. My mommy is home with me today so she has been watching me really closely. I've only had about 15 spasms and they are so little. I took my last dose of steroids Sunday. We are praying that they will stay down. Other than that we are enjoying the good days for now and thanking God for this relief in seizures.
My mommy wanted me to let everyone know that we finally got moved into our new house. We sold our house in Hammond about two years ago. My Paw let us live in the trailer by his house. (Thanks Paw) The plan was for us to buy land and build. Mommy wanted to wait until after I was born to start building so we waited. I was born in August and mommy stayed home with me until December. Mommy and Daddy started looking for land in January. That was also the month that my mommy knew something was not right. By February my family got the terrible news that I had IS. So of course we stopped looking for land. In fact, we didn't even think about buying land. All we were concerned about was getting me better. We knew building could wait. When we look back we realize how perfect God's timing was. We were able to sell our house when houses weren't selling. So we didn't have to worry about a house note when my mommy took a leave from work. Now a year later and much thanks to the USMC and VA loans, we have finally bought a house and moved. I want everyone to know that the donations you all have kindly given us have nothing to do with us buying the house. It was in our plan but with all that has been going on we were unable to. My mommy and daddy have a totally separate account with all my donations. We use that money for my medical use and expenses. We are so thankful to have that account. That account has allowed us to travel and see the very best doctors so that I can get better. It really makes our life a little easier. We love you and thank you so much for all you do for me and my family. When you pray for me today don't forget to thank God for this relief in seizures. I can't explain how awesome it has been for us!!
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.