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, March 2, 2014

Therapy, Therapy, and Sports!!!

Lots of new things happened this month. First off my mom was able to get me into the constraint therapy in Alabama. They have a long waiting list so we are on the list for the summer of 2015. Our insurance is covering a good portion of the cost but we will still have to pay about $1400 plus travel expenses. We still are not a 100% sure if we are going to do this therapy but we do want to be on the waiting list. I also started private physical therapy again at innovative suit therapy in Mandeville. In my opinion this is the best therapy center in our area. We are going every Thursday for an hour and a half. At the facility they are able to work on my right hand while they do therapy basically on all my weak areas. One of the main reason we have gone back to them is because I am having to wear my brace again. We saw my brace doctor Mr. Mike at orthotics and Prosthetics ( by the way I think they are the best as well in case you are looking for someone in this area). He didn't want to put me back in my brace but the tendon behind my foot is starting to get tight. I have to wear it a month and do physical therapy. We will go back in a month and see what we are going to do from that point. The suit therapy that I go to is doing an intense therapy session for 3 weeks in the summer that we are going to do. It is 3 hours a day for 3 weeks. It will cost us about $400 for this therapy and we believe it will help me tremendously. We are also trying to get into a therapy in California this summer. It is a study that the brain recovery project is doing. They are only taking 10 participates so I don't know if we will get in but we are going to try. The brain recovery project is an organization that does different studies to see what therapies are beneficial to patients after hemispherectomy surgeries. Unfortunately there is not much research for children post hemi surgery. This foundation is doing these studies. We are so thankful for them because they keep us updated on the latest research that is being done. The study we are trying to get into is a robotic therapy. You can click on the youtube link below to see what I would be doing. It is a game that I would have to play using my right hand. It's pretty cool and interesting. If we get into this therapy, it would cost us $500 plus flights and room. The room would only be $10 a night. I will keep you updated and let you know if I get in. We believe that if God wants me into this therapy then I will get in. So lots of therapy things going on with me. It's expensive but we are trying to give me the best quality of life. You don't realize just how much you need two hands to do things until you can't use one. We know I will never have full function of my hand. It's impossible I do not have the motor cortex that controls that hand. We do know that I can get stronger and be able to use my right hand as an assistant hand but its takes lots of therapy and work. So other than therapy I have been playing soccer. Yes isn't that amazing. I'm attaching a few pics for you to see. I love being able to play with my brother. My mom is also signing me up for tball. I'm attaching a video for you to see. I'm pretty sure I will do fine playing. I'm really into playing sports with my brother right now. My mom says if I can find a way to play then she will let me. Its all for fun at this age!!! I also went to a Mardi Gras parade yesterday. I wore my headphones and I was able to enjoy the parade. It's the first time I was able to handle the noise of the bands. I now ask for my headphones. We have to work on getting me a different pair though. The ones I wore yesterday put to much pressure on my head and I nearly passed out. Yeah I scared my mom and dad half to death but as soon as we took them off my color came back and I was fine. I had them on for about 2 hours before this happened. We have to find a better pair for me that aren't so tight. I hope you enjoy the pics and videos. Please pray for me and that God will lead me in the right direction for all these therapies. I started praying for Him to lead us to the right therapies and He has definitely lead us to some amazing therapies. Thanks for all of your prayers!!

Pics of me kicking the ball and throwing the ball!!! My mom never dreamed she would be able to see me play soccer. God is good!!!

Look at that one handed hit for a 4 year old. Yeah mom says I'm amazing, I'm just finding ways to do the things I want to do!!!

< This is the video of the therapy in California that we are trying to get into!!