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.

Sunday, February 13, 2011

More Great News!!!

First I want to say congrats to my Aunt Rachael and Uncle Michael. My cousin was born on my mommy's birthday. He was 5 pounds 11 ounces and 19 1/4 inches long. He is absolutely perfect and we are so excited for them. Now on to me. Well its been 2weeks. Yes 2 whole weeks with only 20-40 very small spasms a day. I don't think I've ever gone this long with this few seizures and this less intense. You have to be holding me to know that I'm having them. My eyes aren't rolling way back in my head either. We still can't believe it. People this is huge news for me!!! Just when it looked like we would never get control of these things LOOK WHAT OUR GOD has done!!!!!! We were so sad when I got RSV but it has been the best thing that could have happened to me. Between the topamax wean and the steroids I'm doing 100% better. I'm not going to lie and tell you we don't worry. Each morning when we wake up everyones eyes are on me counting making sure I'm not going to have more seizures than the day before. Yes we are VERY VERY thankful just scared they are going to increase and get more intense. We again are just trusting GOD and we keep reminding ourself that He is in control not us. We don't know what the next day, week, month, or year will bring but today I can't even explain the joy we have in our hearts. We go back to the neurologist on March 1. The plan is to start zonegran. We are also going to talk to her about maybe doing another round of prednisolone to try to stop these things completely. Please continue to pray for me as I continue to fight this horrible thing called epilepsy. Right now I'm winning and I'm determined to win in the end. I love you all, Jadon

1 comment:

Hannah Poche said...

That is wonderful! We will continue to pray for him!