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.

Sunday, June 23, 2013

It's tough growing up!!

I'm still enjoying every minute of summer. I've had a couple of appoinments this past week. I went to the brace shop and I no longer have to wear my sure steps. I only have to wear my brace. The sure steps were helping me get my heel down and I'm now able to do it without them. I have to go back in two months to see how I'm doing. I also went to the dentist. He said everything looked great and my brother and I didn't have any cavities. So great news at those appointments. I have gone 4 days and 3 nights without my nunu(pacifier). If you know me, you know that this is a major accomplishment. I was so attached to my nunu. It has been my security through every needle stick, hospital stay, surgery, therapy, doctors visit, etc. It has helped me get through it all so for me to go this long without it is pretty good. I'm not gonna lie its been hard because I have a solution for everything my mom tells me. For example, the dog took my nunu so my mommy told me the dog took it and it was gone. Well I knew I had more than one so I told her I had two of them. She then said she lost the other ones and I said I find one in my playroom. (We always find them there when we lose them.). When we couldn't find one in the playroom, I just told my mom to go buy me a new one at store. All of this while tears are coming from my face. So yes its been hard and mom has cried with me but we are getting there. I'm only asking for it every now and then with no tears. I'm just growing up this summer. I don't have a nunu anymore and I'm potty trained. I'm going to be ready for prek for sure now. Our next thing to work on is finding a way to get me feeling secure on the big potty. My right sided weakness makes it hard for me to use the big potty. We are looking at different seats and stools to use to help with this. We will figure it out. For now we are satisfied with me being able to use my little potty and that I'm telling someone when I need to go. I've also been working on using my right hand. I'm working very hard and I'm able to use it as an assistant hand in order to help me string large beads. I'm also working very hard on naming the letters of the alphabet and their sounds. I can name 8 letters and I know 17 sounds. Oh and I'm able to jump now. I can't jump very high, but I can get off the ground and I love to show people that I can jump. I have a neurologist appointment at Children's Hospital in New Orleans on Tuesday. Please pray that I will have a good appointment. I can't wait to show my neurologist all my new tricks. I'll update you after the appointment. Love you, Jadon

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