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, June 17, 2012
Right now we are just enjoying life. We have cut back on some of my therapies. Just remember my mom does therapy with me all throughout the day so its ok that we cut back some. We are trying to relax and enjoy our summer. My RaRa took us to the beach this past week. I had such a great time. I just love the beach, the sand, and the pool. I even got to play putt putt golf and ride the go carts. I was just tall enough to get to ride them and it was definitely one of my favorite parts of the trip. I left some pics for you to see. As far as development, I continue to make progress each day. I just made 5 months with no seizures. It's hard to believe that 5 months have passed. The progress in those 5 months have far exceeded what we originally expected. You see God had a plan that was greater than what we could ever imagine!!! Please continue to pray for me and that I will remain seizure free. Also please pray for my friends who are still having lots of seizures a day. Especially my friend Connor. He just started a new medicine and it is helping so please pray that the medicine will continue to help his seizures. Also begin praying for my trip to Detroit. It is a month away. I will have a MRI while there to check everything out. Thanks for all your prayers. Love, Jadon
Saturday, June 2, 2012
I'm still doing amazingly well. I'm using my right hand more and more. My mommy makes me use it throughout the day. One of her favorite ways to practice is at walmart. She makes me hold on to the buggy with my right hand. I do it every time. I continue to make huge gains with speech. I told my mommy the other day "Momma I want french fry." Yes that is a 6 syllable phrase. I say little phrases like this ever now and then. It's not clear but very understandable. When we go out in public others are able to understand what I'm saying. The words that I've been saying for a long time are as clear as can be. My speech continues to improve and amaze my family daily. I've become very demanding. I know what I want and what I want to do. It's hard to take me out to dinner and places like that. I want to be down and going. You know typical 2 year old stuff. My family is actually excited that I'm a handful. It's something we waited for a long time. I started doing something that my mommy still does not believe. I woke up one morning and said pee pee. She took me to the potty and I went. Since then I go to the potty 2 to 3 times a day. I have also gone #2 on the potty twice. I understand what to do, I just have to work on the control part. It's unbelievable that I have that much cognitive skill to understand this concept. My mommy wasn't even trying to potty train me and I started on my own. UNBELIEVABLE!!!! I can't even describe the cognitive skill gains that I've made since surgery. It's just something you have to see for yourself. Everyone that sees me notices it right away. I understand everything!!! Praise GOD!!!! I added the link to the interview that Fox 8 did to my blog. Fox 8 did a great job putting this interview together. Its a must watch if you missed it. I also added the two videos my mom made for me if you would like to watch them. I got some super exciting news this week. Troop L with the Louisiana State Police has granted my make a wish. I will get to go meet Mickey Mouse with my family in October. We are super excited about this. Thank you so much Louisiana State Police!!! Well that's about all. Life is great right now. I'm reminded of the lyrics "the pain that you've been feeling can't compare to the joy that's coming!!!" Two years my family watched me suffer through all these seizures a day so yes the joy that we have right now it great. Thank you God for everything. We will continue to be faithful to you and trust in your plan!! Please continue to thank God for taking my seizures away and continue to pray that I continue to progress so well!! Love you, Jadon