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.

Friday, March 23, 2012

Tomorrow is the day!!

Tomorrow is my 5k run. I'm very excited and can't wait to see everyone. If you can please come celebrate my progress with us. You may even get to see me do my new trick. Yes I started taking steps yesterday. I can take about 5 steps. I get so excited and start going to fast. I have to learn to slow down a little and then I will be walking everywhere. My mommy and daddy are so proud of me. They never thought that i would progress this fast after surgery. I'm only 9 weeks post surgery and I'm saying about 50 words. The best part about me talking is I'm starting to use the words without my mommy having to say it first. I'm also saying people's names when I see them. Today we stopped at my papa's funeral home and as soon as mommy got me out the car I was saying papa. I knew he was in that building. I'm doing things that my mommy and daddy didn't know if I would ever be able to do. It's amazing!!!! We thank God everyday for what he has done. I hope to see you all tomorrow. If you haven't registered don't worry you can register in the morning. See ya in the morning, Jadon
For more information and times visit jadonsrunforrecovery.com

Wednesday, March 14, 2012

Detroit Results!!

I had a GREAT trip to Detroit. We did not get to stay at the Ronald McDonald House this time because of our flight time. We stayed at a hotel by the airport which was alot of fun. They had a swimming pool and I got in it everyday. I left you a picture of me swimming. I just love the water!!! I received AWESOME news in Detroit. The first test I had done was a CT scan. I saw my neurosurgeon after the test. He said that my CT looked great. I didn't have any fluid build up. This is great news because it means I do not need another surgery!!!! The neurosurgeon said I'm doing great and I will continue to get better. The next day I had my 2 hour EEG. I did fairly well while they put the leads on this time. I usually scream the entire time. They swaddled me up( see pic) and I actually did better this way. Once they hooked me up is when it began. I did not want the leads on my head. I keep pulling at them the entire time. I finally fell asleep for a little while but I didn't sleep long. I then woke up and was back at trying to get it off. It was a long 2 hours. The great news is that my EEG was normal. YES I went 2 hours without having a seizure while hooked up to EEG. I can remember a time when they needed me to go 2 hours for a test. They tried for 3 days and I never went 2 hours without having seizure activity. So yes we are very excited that my EEG was normal. That means I have gone over 2 months without having a seizure. It unbelievable but with the help of God and the doctors at Detroit Children's Hospital, I have been given a new life. I can't tell you how grateful I am for meeting this neurologist that saved me from these seizures. Him and his staff are totally amazing. I can't say enough about how awesome they are!!!! After my EEG we met with my neurologist. You know Dr. Rockstar!!! He was very pleased with my progress. He said I'm doing amazingly well. I gave him a high five with my right hand. I said some words for him. I even reached out for him to hold me and he took me right away. You see I told you he was AMAZING!!! He said that I am doing extremely well but that we haven't seen anything yet. He said just wait and watch what I'm going to do. It's going to be great. He talked about me going to school and that I may even be able to go to college one day. He said we need to have high expectations so that I can reach my maximum potential. He said that since I haven't had any seizures so far it is unlikely that we will ever see another seizure again. Can you believe that? No more seizures. Words can't describe how awesome we feel. I have to stay on my seizure medicine as a precaution for a year. If I'm still not having any seizures next January, he will take me off my last seizure medicine. By the way I'm only on 1 very small pill so I really don't mind taking it. We will have to go back to Detroit in July. At that time they will do a MRI with DTI testing which will show exactly what has transferred to my right side. I want to thank each and everyone of you for your prayers. I do not believe we would be where we are today if we didn't have everyone praying for me. Thank you for being a part of the miraculous experience. Please keep praying for me and I can't wait to show you what I'm going to do next. Oh and by the way I'm now saying over 40 words. Yes I know unbelievable!!!!

Saturday, March 10, 2012

2 months seizure free.

Today makes two months since my surgery and two months of no seizures. I'm so happy that I'm not having seizures anymore. My life is so much better. I'm learning more and more new things everyday. I'm so thankful for what God is doing in my life. I leave in the morning to go back to Detroit. I will have a CT scan on Monday and then an EEG on Tuesday. I have an appointment with my neurosurgeon Monday and with my neurologist Tuesday. I come home Wednesday. Please say some extra prayers for me. These two test are really important. Monday's test will show if I have any fluid build up. They don't expect that I will but if I do I will have to have another surgery. Tuesday's test will let us know if I'm having any spiking or slowed brain waves. We do not think I am but this will let us know for sure. Please pray that both test will be normal. I'll keep you updated while in Detroit. I cant wait to show my doctors all my new tricks!!! Love ya, Jadon

Sent from my iPhone

Friday, March 2, 2012

5k run/ Yearly evaluation

March has arrived and I'm very excited about this month. On March 24 they are having a 1 mile fun run/5k run for me. It's going to be so much fun. Ms. Louisiana will be there. Chris Gray will be there to play. We have 2 praise bands that will be playing. We also have dancers from the local dance studios that will be performing. There will be a petting zoo for the kids and inflatable bounce houses. They will have food for lunch and awards for the winners of the races. It's going to be a fun day. I can't wait to get to see everyone. So if you have been keeping up with my story and never met me, it would be a great time to get the chance. It's going to be a great day to celebrate with my friends and family my progress. You can read more about the race and print your registration forms at http://jadonsrunforrecovery.com/ Don't forget that forms are due by March 10th. We will accept forms the day of the race but we can not guarantee that we will have a shirt for you. It's also cheaper if you go ahead and send the form in. So get your forms in soon and I can't wait to see you there. I will be participating in the 5k race. My mommy is going to push me and my brother. When we get to the end she is going to let us get out and cross the finish line. I can't wait!!!!!!
As for me, I'm still doing amazing. I can walk in my walker again. My mommy wrapped my hand around the handle and I took off. I had my yearly evaluation with early steps today. I did amazingly well. The evaluator has been evaluating me since I first started and she was totally amazed. I was matching colors, pointing to objects that she said aloud, stacking blocks, putting rings on a stick, matching animals, pointing to my feet and others feet, and following directions. I was doing some 3 year old cognitive skills. So my cognitive skills were great which is awesome. My social skills were amazing also. I love others and interact with others. Of course my motor skills and speech skills are behind but those have been the hardest things for me to do. Though they are behind, I have made huge improvements since my last year's evaluation. We will not know the exact results until the end of the month but hey its much better than we thought. We are super excited about how well I did. I have done nothing but progress since my surgery and I proved it today!!!!! Thanks you so much God for everything you have done for me!!!!!!! Here is a video of me walking. I hope you enjoy it!!

Please continue to pray for me. Your prayers are helping me recovery. We leave 3-11-12 to go back to Detroit for my checkups so please begin praying for that. The two test that I will have done while there are very important.