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.

Saturday, January 21, 2012

I'm doing amazing!!!



Sorry I haven't blogged we have been very busy since we left Detroit. So let me catch you up. I did excellent on the flights home. I slept the first flight and played a little on the second and then fell asleep. I was so happy when we got to NOLA. I was much stronger and so happy. That was until they started messing with me. I then started fussing everytime someone walked in the room. I started therapy the next day. I was doing great. I was holding my head up and I tried so hard but I finally couldn't go anymore and I got sick and then fell right asleep. I want everyone to understand that the therapy at NOLA was absolutely great. I'm just not strong enough yet to handle the requirements that insurance needs me to do to be inpatient. I also do not like hospitals. They make my anxiety go way up. With that said my mommy and daddy thought it would be better to take me home. It has been the best thing for me. I have been so happy at home. I'm doing new things every day. Yesterday I said the word go. Today I said PaPa, Jacob, and puppy. In order for you to realize how awesome it is that I'm talking I have to tell you this. You use the left side of your brain for communication skills. Well they removed my left side. You see my communication skills had already transferd to my right side before I had surgery. I believe with all my heart that God was preparing my brain for this surgery all along. I'm also putting weight through my right arm. I can get up on all fours. I'm moving my right arm. I'm trying so hard to learn to crawl again. I will get it. I'm also able to stand on my legs as long as mommy is holding my waste. Its totally amazing. My family is so excited to get to witness this miracle that God has done in my life. Please continue to pray for me I still have a long way to go. Also thank God for what he has done. I have an EEG two weeks from now that will rule out seizure activity so please start praying for that we receive great results. I'm sure we will. Love you all, Jadon

Oh for those of you interested I'm leaving a picture of my CT scan. You can see that one side has brain and the other no brain. I find this totally amazing. By looking at the picture it will definitely make you believe in miracles.

5 comments:

Anonymous said...

Jaden, I have been following your story since one of my First Steps families posted about your surgery. You are a truely amazing little boy. I think about and pray for you often. I can't wait to see what amazing things you will do. Hugs to you and your family from an OT in Indiana.

Anonymous said...

Jadon - you and your parents don't know me but I've been following your story for a week. I am praying diligently for continued healing and progress. Your mommy inspires me EVERY day to look beyond my own little world to see how big our God is and how my problems are nothing compared to what you have been through. Your mommy's faith is a daily inspiration to me and I'm so glad she is sharing the story of your life with others.

tina e warren said...

Jadon, I am so glad that you are doing superbly. You have people there to help you and your parents have someone to discus health concerns with. When I came home, I had no sence of timing. I actually had to learn how to sleep. I could stay up 24 hours and never know it.I have an experimental block or disk in the center of the brain to counteract tremors from a siezure and stop the siezure. I have been lucky. So far I have only had one siezure--when I was working on a masters diploma in the 1990's at the University of Denver. The oxygen in the room got too low and I experienced my first tremor. The disk caught the movement and stopped the shaking. hopefully, I won't have any more. Hopefully, you won't have any more either.Please keep us informed of your progress. Are you allowed to discus what you do in therapy? I have trouble with motor coordination with my legs and feet. I probably needed dance classes when I was little. Lots of hugs and kisses and hope that you continue to do well.

Prayers for Jadon!! said...

You are doing so wonderful!!! I will be continuously praying for you to have a speedy recovery, so you can do everything a little boy should do!!!!

jedjakemom said...

Truly amazing! What a sweet lil family.