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.

Thursday, September 12, 2013

Pre K update!!!

Wow!! Its hard to believe that we are almost 6 weeks into the school year. I'm doing really well in school. I stay in the regular prek room for most of the day. I'm pulled for 30 minutes when I first get to school and then 30 minutes before lunch in order to work on my IEP goals. I'm also pulled for OT, speech, PT, and APE. All of my therapist are amazed at how much I progressed over the summer. In fact, my PT asked my mom what kind of therapy we did this summer because I am doing so much better with my motor skills. Mom said we just swam all summer. I can't tell you how much swimming helps with balance and strengthening. It has been one of the best things for me. Other than my therapies and pull out times I do things such as centers, circle time, and nap. During centers my special education teacher actually comes into the regular prek room with me and helps me. When we do centers the 2nd time during the day, a para educator helps me go to each center. Circle time seems to be the biggest challenge for me. Believe it or not me the little boy who has the entire left side of my brain gone which contains the speech center is getting in trouble for talking way to much during circle time. I've actually never been taught that I have to be quiet sometimes. I've always been encouraged to talk since I didn't talk for so long. So now we are working on when it is appropriate to talk and when I have to listen. It may take a while but I'll get it. I'm also eating lunch with my peers and doing pretty well. I have my moments but I usually straighten up once I'm corrected. Mom says I'm doing better than she thought. She put me in the prek room all day to start with to see how I would do and I'm staying in there much longer than she thought I would be able to. I lay on my mat for nap time. I have a para in there that helps me go to sleep but I'm taking naps with all the other kids. I'm also doing well with the potty. So far I haven't had any accidents at school. So yes I do have some things I need to do better with but overall I'm doing GREAT and my family is proud of me. Since I'm doing so well overall my mom and dad have to remind their self just how far I've come in such a short time. I mean I just started fully walking 100% of time this time last year. So when you think about that it is just amazing at what I'm doing. Here is a picture of me and my brother on my first day of school. Oh and I almost forgot. I'm not walking with a brace anymore!!! Thank you God for what you have done and continue to do in my life. Love you all, Jadon