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.

Saturday, October 27, 2012

WOW!!! A much needed update!!!

Ok so I can't believe it's been two months since I updated my blog. I'm so sorry for not updating sooner. Our computer was broken so we had to get it fixed and its very hard to update from a phone. So let me catch you up. A lot has been going on in the last 2 months. First of all I did get my early steps evaluation back shortly after my last post. It showed that I'm progressing very quickly. In fact I'm progressing more than average. Mom says I'm making up for lost time. I've also been going to therapy at school with mommy. My therapist are great and I love going to school with mom. I continue to make progress developmental. I'm walking everywhere now. I do not scoot anymore. I can walk with and without my brace. I do walk much better with my brace but I can do it both ways. I can push up to stand. I can kick a ball while standing. I can bend down and pick something up off the ground. I can also carry something around while walking. I can't quit keep up with my brother yet but I do a pretty good job of keeping up with him. Just this week we went to trunk or treat at my moms school. Well I walked and followed my brother the entire time. It took us 30 minutes to walk through all the tables and cars and well I did it. I walked the entire time. My mom was overfilled with joy. My dad and her love to watch me be able to participate and have fun doing things now. It's so amazing to watch me do the things we didn't know if I would ever be able to do. Speaking of amazing my speech is just awesome. I improve everyday. The other day I told someone thank you for bear. It's so unbelievable to watch me. People who haven't seen me in awhile are just in awe of what I'm doing. Life without seizures is awesome. I don't want to say this too soon but I'm going to. The last time I was in the hospital was right after my surgery. I have gone 9 months without being hospitalized. I've never been able to do that. I can't explain how different our lives are now. We have truly been given a new life. Yes we still have our struggles but things are a lot better. So this is a few things coming up. I have my EEG in December. If everything looks ok which we expect it will I will be weaned off my last seizure medicine. Can you believe that? I never thought we would see that day. We are also getting ready for my grant a wish trip. We will leave to go to Disney World February 10. We are super excited about this trip. We can't wait to get away and enjoy some family time together. The main thing I can tell you through all of this is that God has been right beside us and blessed us more than we could have ever imagined. We are getting close to my 1 year seizure anniversary. We plan on having a big party. I will let you all know details at a later date. The party will be January 10 which was my 2nd surgery date. It was also the last day that my mommy and daddy saw me have a seizure. At the party we will have a prayer of thanksgiving. We will then have cake and punch. Specific details will come later. Ok so I promise I will do a better job of keeping you updated. Please continue to pray for me and I love each and ever one of you. Here is a pic of my brother in our Halloween costumes.

1 comment:

ekjrn19 said...

This is just amazing! My heart is so happy with the tremendous life you are living! Your story makes me think every day how hard you fight. It really makes me put perspective on my "problems." YOU ARE A HERO!