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, May 15, 2012
I don't know where to begin. I haven't updated in so long and I'm making amazing progress. First of all let me tell you the best news yet. I'm 4 months seizure free. Wow I can remember when I couldn't go more than a few minutes without having a seizure and now I've made it 4 months!!! Praise God!!! I had an evaluation done the other day with the school system. When I turn 3 I will no longer be able to recieve therapy through early steps. I will have to transfer to the school system. I know I will have great therapist at school but I'm really sad about having to leave early steps. I have wonderful therapist who enjoy working with me. Mommy loves to listen to them play and laugh with me. I'm so blessed to have each one of them to help me make improvements everyday. Anyway my evaulation went really well. I will enter the school system as a child with Other Health Impairments. This means I will have on IEP and get OT, PT, Speech, APE, and special instruction. So I will get all my therapies I was getting with early steps. Something that we are excited about is my interview I did with fox 8 news new orleans. Alot of people are going to hear my story and hopefully others will be able to get help like my mommy got for me. It is suppose to air sometime this week. The news has a skpe interview with my neurosurgeon in Detroit Wednesday. It will be sometime after that. The news crew that came to my house was very nice and amazed by my story and progress. Talking about progress. I continue to make huge gains. I started taking steps again. I was having lots of trouble with my brace . We got it fixed and we put an arch support in my left foot so that I could stand level. Well I started taking steps 3 days later. We are very excited about this. I'm also getting much better with my balance. Mommy said she thinks its the pool helping with that. I love to swim and it has been great therapy for me. In fact for Mothers Day we went to the beach for a few days. Mommy found a room for $60 a night at the grand casino so we packed up and went. I want everyone to know that mommy and daddy used their tax refund money to takes us to the beach. All of the donated money stays in my account and is only used to help pay medical bills and to help make up the difference that my mommy is getting cut from not being at work. I don't want anyone to think we are taking advantage. We are so thankful for all the donation and everything that everyone has done for us. You all have helped our family more than you know. Anyway I had lots of fun on vacation. I got to play in the sand, swim in the gulf, and I loved the hotel pool. I swam all over the pool. I also learned to jump in the pool. I sit on my butt and jump in. I'm so brave. I look a little scared when I come up but I kept doing it over and over. I left a video of me jumping in. I basically did everything a two year old would do on vaction. I swam in the pool, played in the sand, played in the waves, road one of those big bikes in the water, took a nap on the beach with momma, fed the sea gulls, and knocked down the sand castles daddy built :) It was a great time and a much needed get away for my family. Last time we went to biloxi was a few months after my diagnosis. It was a time to get away and try to get our minds off things. Well this time it was a much different situation. It was a time to get away and enjoy every new thing I'm doing and with no seizures. I can't tell you enough how much our life has change now that I'm not suffering through 200 seizures a day. My mommy doesn't have to watch me suffer instead she gets to watch me progress and do things a typical two year old would do. We will thank God everyday for this miracle he has given me. Thanks for praying for me and please continue to keep me in your prayers. I'm leaving a few pics from our beach trip. I hope you enjoy them. Notice the one of me holding my sippy cup with both hands. Yes it's blurry because I only do it for a few seconds and mommy had to hurry up and take the pic but this is huge progress!!!