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, May 8, 2014

A much needed update!

Wow! Where does the time go? Anyway my therapy has been going great. You can see me in my suit in the pics below. Pretty cool stuff. I've moved up three times already with my weights. I'm getting so strong. Unfortunately I will have to continue to wear my brace. My tendon has loosened up on my ankle but I still need the brace support. I will probably have to wear it a while but I really don't mind wearing it. I already have my new brace in and my new shoes. I've only had it about a week and we can already see improvements with my balance and gait. We also found out that we did not get into the study in California. They took 7 kids and decided to go with kids who are a little older than me. I'm sure there will be other opportunities that come up in the future. We are having a 5K race May 17, 2014 at North Park. All money raised will go to the hemispherectomy foundation. This money is used for research for kids with hemispherectomies. We will have a donation jar at the park for anyone who did not get a chance to sign up. Just bring a donations and we will see you there. I will be doing the 1 mile fun run so bring your kids and let them walk with me!! We will start the race at 8 so we are asking everyone to be there for 7:45. I'm also playing tee ball. I left you a picture of me running to first base below. It's so amazing to watch me play. I get distracted but overall I'm doing really well. Talking about progress I have been doing excellent in school. I pretty much know all my letters and their sounds. I also know most of my numbers. This past month I brought a book home from school and read it to my mommy. I had memorized the book but its still amazing. I looked at the pictures and knew what the words were on that page. I'm also beginning to write my name. I can write a J. Writing is so hard for me. My mommy thinks it's because I was right handed and now I have to learn to write with my left hand. Plus I already have motor delays. So when I wrote a J my mommy couldn't believe her eyes. As you can see things are going really well for me. I have had a few sinus infections and strep throat but I think we all have been sick this past month. Thank you all for continuing to pray for me. I'm looking forward to summer and getting to stay home with my mommy and brother! Sending lots of love and hugs to you all, Jadon

Oh I almost forgot, I posted a video of the fox 8 interview that we did a while back on my blog. You should watch it. It reallly shows how far I've come!!!