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.

Thursday, June 3, 2010

I don't want to sleep, eat, or drink

Well I got my last shot of ACTH yesterday. I am so excited that I do not have to get anymore of those shots. I am still having spasms. They are not that intense. In fact, they are very hard for my mommy to count. I am having about 10 more intense ones a day. We will see how I do with the spasms within the next 2 weeks. Hopefully they will not not get more intense. I am having trouble eating, sleeping, and drinking. I can't sleep more than 3 hours at a time. I usually go to be around 9:30 and I am awake by 12:30. I stay awake until 3:00-3:30 go back to sleep and am up by 6:00. I take a few little 30 minute naps during the day and then a 2 hour nap in the afternoon. I sure hope I start sleeping better soon. My mommy needs some sleep. She has been bringing me to my Mar's house in the morning so she can sleep some. I'm also only taking about 10 ounces of milk a day and I will not eat my baby food. My mommy is hoping I don't get dehydrated. I did this last time I was coming off the ACTH but not this bad. Well I have OT today at North Oaks and then my last blood pressure check tomorrow. My EEG is Tuesday so we are anxiously awaiting for that to see what we are going to do next. I am still smiling and getting stronger everyday. I'm even using my right hand to grab things:) I got my new shoes and they give me more support. I can even stand up in mommies lap. I will keep you updated on my progress. Please pray for me!!! Jadon

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