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.

Tuesday, August 14, 2012

Neuro results and I got my new brace :)

Things have been going really well since mom went back to work. I've been a good boy and I don't cry when she leaves. I do stay right by her when she comes home though. We are in the process of scheduling my IEP meeting so I can go to school when I turn 3. We are not sure when and how long I will go but I'll let know when we find out. I do know that I'm going to go to MMO on Tuesday and Thursday. We stopped by and saw Ms. Pat(my teacher)this morning before we went to my appointment in NOLA. My appointment went great. She said that I look fantastic. We do not have to see her again until December. In December we will do a video EEG and send it to Detroit. As long as it looks ok then we will wean me off my Vimpat :) So we had a great appointment but we are going to miss getting to see my neurologist. She has become very special to us. After my appointment we went to the brace shop. I finally got my new brace and you aren't going to believe this but I'm walking,walking,and walking some more. So after waiting two weeks with no brace, I just picked right back up. In fact I'm doing better than before. I took 58 steps tonight. I'm also walking just because I want to without anyone telling me. My mom walked out of her room this afternoon and I was walking down the hall. This made her so happy :). I'm doing so well and I continue to make huge progress each week. Thank you all so much for praying for me!! Love, Jadon

1 comment:

Jenna said...

Hi jadon
Hi My Name is Jenna
You are a brave courageous fighter, and an inspiration.
I was born with a rare life threatening disease, 14 other medical conditions, and developmental delays.
Tis a lesson you should heed,
Try, try again;
If at first you don't succeed,
Try, try again;
Then your courage should appear,
For, if you will persevere,
You will conquer, never fear;
Try, try again
who invented fire? some bright spark
http://www.miraclechamp.webs.com