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, July 29, 2011

Getting ready!!!


We are getting ready to leave for Boston. Our flight leaves Sunday at 1:30. It is a direct flight into Boston..Yay!!! We arrive in Boston at 5:55 which is 4:55 Louisiana time. It's just me and mommy and mommy is a little nervous about that. Mainly because she will get the results in Boston all by herself. Thank God for cell phones and skpye. We are staying at a hotel this time because family housing is booked. So yes a $60 dollar stay has turned into $400. We have to do what we have to though. There are several others who are in the hospital longer than I'm going to be in that need a place to stay too. We have been very blessed to get to stay in the family housing in the past. We know everything will work out. I'll keep everyone updated while we are there. I will be admitted on Monday at 1:00 pm. My Pet scan is Tuesday morning and then we will be released sometime Wednesday once we get the results. Please pray that they can find a way to stop these seizures. I really need some relief. Having 100 seizures a day is no fun :( I have to leave you with a happy. My PT was playing around yesterday and decided to put tape on my feet. It has made a huge difference. I'm able to feel my feet better and I'm standing straight up while holding on to things. I've been doing this for a while but I've never stood straight up and been as sturdy as I am now. It's the little tricks that make a huge difference. We are also going to start trying to increase my lamictal again. So tomorrow morning we will increase it by 5 mg. Please pray that the rash stays away. We don't want to deal with that again. Thanks for praying for me and my family. If you don't mind say a little prayer for my brother. He doesn't like it when we have to leave for the hospital. He really is a great big brother. Just look at the picture :)

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