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 22, 2011
Keeping our fingers crossed :)
Other than being fussy the lamictal increase is working great. It has cut my seizures done in half. I've gone from having 80-100 to about 40-50. Yay!!!!! Now the question is will it continue to work. We are praying that it will. We still have to increase it two more times to get me on the therapeutic dose. So our hope in the medicine has gone from 0 to wow maybe this will work. We are already at half the seizures and still have more increases left. You know when my seizures go down that means new tricks. Well I have several new tricks. The first one is signing the word more. I have always signed more but it was more like a clap than the actual sign. Well I'm doing the sign correctly now which means more control of my hands. I'm also getting frustrated. I just want to do everything my big brother is doing but I just can't. My family is great about accommodating me so that I can do as much as possible. Even if it means they have to hold me and do it with me. I'm also getting frustrated with my speech. I'm trying so hard to tell everyone what I want, I just can't. I will keep trying hard and hopefully I will get more words soon. So I saved the best trick for last...Drum roll please...I'm pulling up!!!! I can only make it to my knees. I try to stand from the knee position but I fall down. We know I will get it soon because I'm determined. I just started doing this yesterday and I woke up doing it this morning. So all great things around here the last couple of days. The only downfall to this is the side effects of the lamictal. I'm very fussy and I'm waking up for about an hour during the night. The fussiness will stop once I get used to the medicine. We are hoping I will start sleeping through the night again too but hey we will take it. An hour a night with few seizures is much better than several times a night with seizures all the time. Please continue to pray for me. We are leaving next Tuesday for Boston. So we need lots of prayers!!!
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