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, June 23, 2010

I'm home!!

I did great while in the hospital. In fact I slept from 7 pm to 5:30 am. My night nurse was great. She didn't come in and take my vitals because I was sleeping. We had several of the same nurses we have had in the past. They all talked about how much bigger and stronger I have gotten. It was good to see them but not fun to stay in the hospital. We made it home around 4:00 today. My daddy had to drive through that bad weather but we got home safely. I got some of my results from my spinal tap back. Now all we are waiting for is the neurotransmitter test . The other test came back normal. My keppra and topamax levels are also at their max so we can not increase them anymore. They did increase my clonazepam because I am having so many seizures. I had about 90 seizures today and I still haven't gone to bed:( My neurologist is trying to get me a new medicine. It is called clobazam but it is not a US drug. It has to come from Europe or Canada so it may take a few days for it to come in. It is also not covered by insurance. We really don't know how much it is going to be but it doesn't look that bad. Probably about $100 a month. They want to put me on this medication in hopes to decrease my seizures until I get the results of my spinal tap. We are kinda stuck until we get those results. There are several more options that the neurologist discussed with us but we just have to wait. When you pray for me today please pray that we will get the results back quickly. Pray that we will be able to get the new medicine quickly too. Also pray that God will continue to protect my brain during this time. Its so amazing that I am so alert and learning new things will having 90 seizures a day. We also ask that you thank God for the amazing things he is doing for me. I have to call the neurologist tomorrow so I will give you an update on the status of my clobazam as well as a seizure update. I left you a picture of me on my way home today. I am so happy even though I am going through so much. I amaze my mommy and daddy. Thanks again for caring for me, Jadon

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