I didn't have my EEG done Thursday. We emailed my doctor in Detroit and he said the sedated EEG would not give him the information he needed so my mommy canceled my appointment. We didn't want to do more testing than necessary. We will now wait and get my EEG done when I'm in Detroit. I know that's a few weeks away but I would rather wait than be poked for IVs again. I have made amazing progress the last couple of days. I'm learning to crawl again. I'm starting to do it on my own some but my mommy has to make me most of the time. I'm climbing up on the couch. I'm also walking along the couch while holding on to it. I can also pick up a ball using both hands and then throw it with both my hands. The new words continue daily. I learned to say Mickey when I want to watch T.V. Yesterday I said french fry. Just this morning mommy was calling my puppy Jet and I said Jet. My mommy and daddy can tell me to do something or get something and I do it. I can understand much better than before surgery. I'm saying several animal sounds. You have to say them first but then I say them after you. I can also point to my head, eyes, nose, ears, mouth, tongue, belly and toes. I do get confused at times but I can do it. I'm clapping my hands. Yes you can see that right sided weakness in everything I do but the important thing is I'm doing it even it if isn't a good as it was before. I'm getting there and doing amazingly well. My neurologist in Detroit is very pleased with my progress. Do you know what all this progress means? It means I'm doing everything I was doing before surgery except walking with my walker. I can stand in my walker but I can't hold on with that right hand. That's the only reason I'm not doing this skill. Wow, Amazing, Unbelievable, etc. Thank you, thank you, thank you GOD!!!! I will update you next week. Next Saturday will make 2 years since I was diagnosed with IS. It's been a rough 2 years but with the help of GOD look how far we have come in my journey. I'm leaving you a picture of me standing against the wall. Look how tall and strong I'm getting :)
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.
1 comment:
Jadon, you are so amazing! you are an inspiration to me, and to all who read your story. You make me feel so good about life. Thank you for being you. The world is a better place with you in it. :)
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