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, July 3, 2012
We are headed to Baltimore!!!
Yes we are going to Baltimore this Thursday. My mom and I will be traveling by ourself. My mom decided that I really needed to go to the hemispherectomy conference they are having there this weekend. They are going to give us lots of information and things to do post hemi surgery. It's information that we just can't get around here. We are very excited about this trip. The best part is I will get to meet some of my online friends. One being my friend Charli and her mom. Some of you probably remember who Charli is. She is the little girl who had her hemispherectomy before me. I posted her story on my blog so that you could see what I was fixing to go through. I'm very excited to finally get to meet her and her mom. They have been so helpful to us. I will also get to meet lots of families who have experienced hemi surgery. It should be an awesome conference. I will definitely let you know how it goes. Please pray that we will have safe travels and that we will learn lots of new things so that my mom and dad can help me reach my maximum potential :) In other news, I continue to make huge progress. Of course my speech is getting better and better each day. I can have a small conversation with a stranger and they can understand me. I'm really into learning to sing songs right now. I'm trying to say my ABC's and I can say several letters. Some of my other favorite songs are the ants go marching, the itsy bitsy spider, and of course the wheels on the bus. We are trying to learn songs that have hand movements that require both hands. Just a fun way to practice using my right hand. I did have to go to the brace shop yesterday. Guess what? I'm outgrowing my brace already. I have only had it for 3 months. It is suppose to last 6 months to a year. The lady at the shop fixed it to last until August. In August she said I will have to get a new brace. The bad news is I have been complaining about the brace since we got home yesterday. I keep saying ow ow until my mommy takes it off. This is not good for my walking. We are going today to try and get me a new pair of shoes. Hopefully that will help me get through next month. I'm leaving you a pick of me playing a chuck e cheese. This is a great place for therapy. I wish we could go there once a week :) Thanks for all your prayers and I will let you know how the conference goes!! Love ya, Jadon