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, July 24, 2012
Today's results
Today's appointment went really well. Dr. C said that my language and cognitive skills are just great. He said we just have to work on the physical part. Though we have to work on it, he said my physical abilities have come a long way from when we started so he was very pleased with my progress. He was very excited I was walking and he said my physical ability will keep getting better. He also said my right hand was tighter than he wanted it to be. He said I do have good function of the hand but he wants more bc he said I have the ability to do more with my right hand. He wants us to tie my left hand up for an hour a day and force me to use my right hand. He wants us to make this a game and make it as fun as possible. We don't want me screaming the entire time or we will not make progress. He also wants us to do lots of stretching. He said that what happens is the brain starts to neglet the effective side. The brain I have was not made to move the right side so it will begin to neglet that side. We have to make me use that side so this doesn't happen. He said he wants to see us back in a year so he can check my right hand out. He said that if it continues to get tight then I will have to have surgery on that hand. So our goal this next year is to really work on that right hand. He also wants me to have a VEEG in January at Childens in NOLA. We will then forward him the results and if it looks good he will take me off my seizure Meds. So exciting, I didn't think that day would ever come. So overall great visit with lots of good information. Thanks for all your prayers and please remember us as we travel home tomorrow!! Talk to ya soon!! Jadon
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