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, November 25, 2010

An angel to watch over me.


Happy Thanksgiving. I am 15 months old today. I finally got my blood work back. My keppra level was double what it is suppose to be. My mommy was so mad that it took them so long to figure out why I was sleeping so much. We aren't 100% sure but that was probably causing more seizures as well as me being sick and getting another tooth. Well we decreased the keppra Tuesday night and guess what I'm a different baby today. It will take a couple of days to level out but I look much better finally. I had to get an antibiotic shot yesterday too. I can't get over this congestion and cough. They also changed my antibiotic so hopefully I will get well. We finally heard back from Boston. They said my recommended calories, fats, and carbs are correct for the diet but my serving size of foods is off. They just said they are not planned out well and they agree that it would be hard to feed a 15 month old those servings. So we are in the process of finding a dietitian here. In the meantime we have an appointment in Boston December 13. We will go and see their keto team and get this diet fixed. Instead of working with 1 dietitian, we will get to work with a team of 4 people. I just have so much going on right now. Many of you know I lost my great grandmother yesterday. She was 90 years old. Mommy said to not be sad. I now have another angel to watch over me and help me get better. We love you Dot Dot and you will be missed by all of us. Mommy said she will teach me to make your stuffed peppers and king cakes when I get big enough. You were an amazing person and we love you very much.

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