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.
Wednesday, December 21, 2011
2 more weeks
Yes we are leaving for Detroit in two weeks. Yes my heart drops as I type this. My mommy and daddy are getting really nervous. Though they are nervous God keeps showing us the way. Just when we start to doubt surgery God says I have control of this just follow me. I will take care of you. With that said I am progressing like crazy right now. I'm learning new words. I can now say cookie, puppy, and PaPa just a clear as can be. I attached a video for you to see. This progression is the main reason we keep questioning the surgery. I do believe God is just preparing my brain for the surgery. I believe I'm already using my right side of my brain for several functions. We do know we will probably see some regression but I'm not sure how much or if any. We will know shortly. Either way we have prepared ourself. We have also noticed that my left leg is moving during a handful of my daily seizures. This makes us REAL nervous as it could possibly mean right sided seizures. The more my mom watches me during a seizure though my right leg always moves first and then my left. So the seizure is still probably coming from my left side and just shooting over to my right. This is just another reason the surgery needs to be done to prevent the left sided seizures from going to my right side. My seizures are still around 100 a day. There intensity still vary. Just yesterday I had one in the buggy at walmart and hit my forehead on the buggy. I started screaming and the people in walmart just looked at me. Mommy just ignored them, picked me up, and kissed my forehead. It left a bruise on my head. I also have a bruise under my eye. I was playing with the water faucet and had a seizure. I hit my eye on the water faucet and it left a big bruise :( Just think in three weeks these seizures could be gone forever. That is what we are believing. There is still a 20% chance that I will have seizures. No one can tell us how I'll do or if I'll still have seizures. If they could this decision would be alot easier. They do think I will do well and that I will not have seizures. We have faith that God has sent us to Detroit and we have to do what he says. Everyone is asking what they can do for us. Right now we need prayers, prayers, and more prayers. Prayer is so powerful and that is the best thing anyone can do for us. I want to also thank everyone who has donated to my benefit fund. Your donations have helped make this surgery possible for me. We can never thank you all enough for what you have done for our family. I'm also so thankful for my mommies work people. You are all amazing. I love you all so much. Thank you for making this a little easier for my mom. I'm leaving a picture below of my moms work people. Yesterday was her last day of work until August 2012 and they came to school dressed in purple with purple wigs to show their support for me. It was awesome. I'm also leaving a picture of my family at our benefit Saturday. Thank you TPSO K9 and all that helped put this together. It means alot to my family.