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, September 1, 2010
Much better :)
I'm feeling much better today. I gave my mommy and daddy a real good scare Monday night. My fever shot up to 103 and I was screaming crying. This caused me to start having trouble breathing which scared them very much. Mommy gave me some medicine and rocked me. I finally settled down. Once I settled down I started breathing better. It took about an hour and half for my fever to go down. Once it went down it never returned thank God. I still have a yucky cough but I look and feel much better. My seizures are also better. They are back to about 40-50 a day. My mom never gave me the clonazepam and would you know my seizures got better without it. Sometimes mommies know better than the doctors. I mean they are the ones that watch you all day long. My mommy and daddy have decided to cancel my private therapy at North Oaks. We are very sad about this. We love our therapist at North Oaks. It is just way to much for my mommy to handle right now. We have no one to bring me to therapy during the day and North Oaks doesn't have anything in the afternoons. So I had therapy 4 days a week now I will have it 2 times a week with early steps. Even though we canceled therapy my mommy will continue to do therapy with me daily.So I will still get my therapy and trust me mommy has learned what she needs to know to do therapy with me. My mommy feels really bad about this but now that she is working she just can't bring me. Other than that we are waiting to hear from the doctor in Boston. He is suppose to call my mommy tomorrow. He is looking at all my test that we sent over. I will let you know what he says. Please pray that he will call with good news. If he can't do anything different I don't know what we are going to do. We are running out of options. In fact my neurologist at childrens in New Orleans said we are not going to try anything new right now. So you can see we are stuck. Mommy and daddy refuse to give up though. We believe that we can control these and that God will heal me in his time. He has already healed part of my brain. When my seizures first started, they were all over my brain. Now they are just in the back left part of the brain. So we will get there. Thanks for your praying for me!! Jadon