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.

Monday, December 31, 2012

2012-My Miracle Year!!!

Well today is the last day of 2012. 2012 has been the hardest but most rewarding year yet. It was the year that I received my miracle. I knew ever since the day that I was diagnosed with Infantile Spasms that the time would come when I would be seizure free. Well 2012 was that year. It was a long process. I really had to trust in God and follow him. I told God I don't need little signs, I need big ones and sure enough he gave us huge signs and led us to the doctors in Detroit. The doctor who immediately said that he could stop these seizures. I couldn't believe my ears. You mean you can make these stop after all this time. Some thought it was crazy. How can you let someone take out half your brain. When I look back and really think about it, I think wow how did I have the strength, how did my parents have the strength. All I can tell you is God gave us that strength and peace of knowing we were making the right decision. Doctors told me I would live a better life and not have to be in hospitals. If they would have told me what I would accomplish in just one year, I wouldn't have believed it. Just this year my miracle year I have learned the following things:

1. I'll start at only 2 weeks after surgery. 2 weeks- I regained all but 3 of my skills prior to surgery.

2. 3 weeks I was saying 18 words and scooting around the house on my bottom.

3. 4 weeks I was giving high 5s with my right hand.

4. 2 months- I was walking in my walker. I also went back to Detroit and got my first normal EEG ever.

5. 3 months-I started taking steps all by myself something I had never done before.

6. 4 months- I was having conversations and saying over 100 words. We took away all communication devices.

7. 5 months- I started to sing the ABCs.

8. 6 months- I got to go the Hemi conference and meet lots of hemi kids. I also had a MRI that said everything looked great.

9. 7 months- I started walking longer periods of time but would still scoot some. I
also started pushing up to stand.

10. 8 months- I turned 3!!!

11. 9 months- I walked up stairs and was walking 100% of the time.

12. 10 months- I started my new therapy and was able to walk down steps.

13. 11 months- I learned to count to 15.

As you can see 2012 was very good to me. Imagine being told by the doctors that they didn't know if you would ever walk, talk, or be able to live past your 10th birthday. As you can see I have learned to do all those things in just 1 year. Its so unbelievable and I know that I couldn't have done it without God and without all of your prayers and support. I can not wait to see what 2013 brings. I love each and every one of you and look forward to my 1 year seizure birthday 1-10-13.

Tuesday, December 18, 2012


I had my appointment with a new office that makes AFO braces. My mommy and I really liked this place. The picture above shows the new brace we are looking into getting for me. This brace will help me walk heel to toe since my foot wants to drop. It will also help with my knee and positioning it. It basically helps improve the entire gait. We will use the insert above to help keep my foot in the right position. My foot wants to lift up and this piece will help keep it down. This is what is giving me lots of problems with my old brace. My foot wants to pop out of it. This will keep my foot down. If you look at the insert,you will also see that my toes are open. This gives me more use of my toes. The other great news is that I will be able to order the walking shoes that go with the brace. You all know how much trouble my brace has given me and how much trouble it has been to find the right shoes. We were very excited that we could order everything here. I was able to try the brace with the insert and the shoes on in the office. It wasn't quit the right size but my mommy liked the way I was walking in it. We are hoping this is the answer to our brace problems. We now wait and see if insurance will approve it. I will keep you all posted.