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, November 10, 2010
Sorry I did not have time to update yesterday. My mommy has been very busy studying this new diet, plus we had a very bad day yesterday. First of all, they had to wake me up during the night to check my blood sugar. Well this messed with my sleeping pattern and of course every time you mess with my sleep my seizures go up. So I had a lot of seizures yesterday. Then they tried to give me my medicines in water. Come on, do you know how disgusting that is? Can you guess what I did? Your right I vomited them right up. My mommy tried to tell them but once again they don't like to listen to her. Well once that happened they finally decided they were going to have to give my medicines with my meals. All of this so could have been prevented. After that I wouldn't eat my lunch. I mean who would want to eat after that dramatic experience. I finally ate around 2:30. My blood sugar also dropped yesterday morning to 49 so they had to give me apple juice. This messed my ketones up which was so discouraging to us. My mommy called one of her friends who lives in NOLA whose daughter is on the ketogenic diet. She came to the hospital and talked to my mommy which helped a lot. My mommy has a phone call in to an herbologist who specializes in the keto diet. The herbologist is going to look at my meal plans and help us with the diet. We don't feel like they are doing enough here for me. Mommy and daddy said they will fight for me and make sure we are doing this diet correctly. The good news is my seizures are back to normal and my ketones are higher today. They are still not at my goal, but they are higher. Other than that, I am very tired and ready to get out of here. I don't know when I will get to go home but hopefully it will be sometime this afternoon. I will keep you all updated. Please pray for us, we are very exhausted and very stressed right now. We can do this though.