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.

Tuesday, April 13, 2010

My new play area!!!

I have had lots of evaluations this week. I had my physical and occupational therapy eval yesterday. I am not as behind as what my mommy and daddy thought. I am currently on a 5 month level. That's only 2 months behind and the last 2 months have been very hard on me. The 1st month I was in and out of the hospital and the 2nd month I was on ACTH injections. So we are very pleased at how well I am doing. The only thing that I am not doing that a 5 month old should be doing is rolling over. Even though I can't fully roll over on my own all I need is a little help. I'm sure I will get it very soon. My mommy has made an area in the house for me to play and build my strength. We no longer have a kitchen table but I do love my new play area. It even has a thick mat so that when I have my spasms it doesn't hurt when I hit my face. My therapist said it is very important for me to play on my tummy. I haven't been able to do that because of these spasms. You see everytime I would have one I would hit my face on the ground. Now that I have my mat it doesn't hurt when I have one and I get to play on my belly. I start private OT and PT next week at North Oaks. I also had a meeting with early steps today. I will start speech therapy and either OT or PT with them in about 2 weeks. Just depends on what they can offer me. My mommy and daddy decided to go ahead and start private therapy so I could start getting help immediately. It is very important that I start early intervention as soon as possible. My neurologist was not happy that I hadn't started yet. Well I get to tell her tomorrow that I'm finally getting some help. My appointment is very early in the morning. We have to be a childrens for 8:30. I well let you know what my doctor says as soon as possible. Please pray that I get a good report from her.

No comments: