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 1, 2015

No news is good news!!

I'm so sorry I haven't updated my blog since August. I have been so busy. You know Kindergarten is hard work. The good news is all I have is progress and great news to share. I will go back to August 2014 when I started Kindergarten. I did very well on my entry test into Kindergarten. I scored in the middle of the Kindergarten students. I was in the lower middle but I was in the middle not the lowest. I walked into my Kindergarten class the first day without any problems. I told my mom bye and went right to my chair. I'm growing up to be very independent. My mom walked me to my class the first two weeks and then I asked to go by myself. Mom said if I could show her how to get there, then I could do it all by myself. Well I have been going to my class all by myself ever since. I tell ya I know my way around that school. September rolled around and I started pedaling my bike by myself. My mom would hold the handle bar for me. Well that only took a few days and then I was off. Steering and pedaling all on my own. This is a difficult skill for a hemi child. You don't realize how much cross over your brain does for your body to function. I do not have that cross over so I have to learn to make my body work without it. Well I'm doing an amazing job. October passed and it was a blast. I got to go see Mickey Mouse in Disney World. My dad worked so hard to bring me there. It was such a fun trip. I just love Mickey Mouse. In November, we visited our neurologist in New Orleans. She said I'm doing fantastic. She made we run down the hall. My mom said she can remember hearing a child run down the hall during one of our first visit with our neuro. She couldn't help but wonder if I would ever get that chance. Well not only did I run for her but I read the word that she wrote down on the examine table paper. She was impressed. We made some changes to my focalin. (The medicine that helps me focus). We have actually been able to decrease the amount of focalin I'm on. We started taking juice plus and we cut back on sugar. This allowed us to decrease my medicine. I was just to medicated. Sometimes I would just sit there and not talk. Since we decreased it, I am participating more in class and I'm doing better academically. In fact I'm doing so well academically. I can now read some sight words, I can sound out words, I can tell you the sounds I hear in a word, I can count to 100, I can add and subtract using manipulatives, and my comprehension is unbelievable. You can read a story to me without pictures and I can tell you all about it. It's just amazing. My Kindergarten teacher is awesome and she is enjoying having me in her room. I just love her. We just had my middle of the year test and I moved up in all of them. In fact I was at benchmark in math and below in ELA but not unsatisfactory. I moved from a score of 17 on one of my test to a 107. I needed a 122 to benchmark so I was close. These are timed test so its hard for me to keep up with the speed but hey I did great. When you think of how delayed I was at one time. Such as not walking until I was almost 3 to where I am now at 5. The reality of the miracle we have been shown is evident. In fact I had my 3 year seizure free birthday on January 10, 2015. It has been 3 years since my last seizure. My mom made a video of my progress this year. I'm posting it below for those who have not seen it. Thanks for all your prayers and support. I was reminded today of just how much you all have helped me. On this day 3 years ago, I was admitted to the hospital for 105 fever. It was a scary day but it was the last time I have been admitted to the hospital for sickness. I was always in and out of the hospital and now it has been 3 years since my last admission. WOW!! Each of you have helped us so much on this journey. You never know what life will bring each day. Love each other daily!! I will try to update sooner next time but know when I don't update its all good :)