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 8, 2011
Well I'm still having seizures and we are on our 3rd increase with vigabatrin. Even though I'm still having them, they are better. They are very little. You have to be holding me in order to know if I'm having one or not. I'm having about 80 a day still. This is an estimation because they are very hard to count because they are so little. We will increase the medicine one more time before we have to make some huge decisions. Please continue to pray for guidance. I do have some good news though. We all know what happens when my seizures get better so here it is. I have learned 5 new animals sounds this week. I now know 6 animals sounds. I'm also making all kinds of sounds. I can say the p,m,b,d,s,k,h and all the vowels sounds. I'm even saying a new word. I can call my brother Jacob. I try to put the cob on the end but it's mainly Jay Jay.You don't know how amazing this is, we have been working on my speech for so long. At one point I was not progressing at all in the speech area. We were very concerned that I may never make these sounds and look at me now. I'm continuing to prove them wrong. My motor skills are also better. I'm using my pointer finger. I'm sturdier when I pull up and I can crawl. My mommy has to make me do it because I would rather scoot but I can do it the right way..LOL Please continue to pray that I keep progressing and that this medicine will take control of these seizures. There is still hope that it can control them but time is running out. Also if you do not mind, please pray for my friend Liam Stine. He has IS like me and is in the hospital. Please pray for him. I love you all, Jadon