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, June 25, 2013
I had an excellent appointment today. My neurologist said I'm doing great. She said I'm progressing along wonderfully. She spent about 30 minutes with us talking, asking me questions, and observing. I talked to her the entire time and she noticed how much my speech has improved. She said that she would see us in December just to monitor my progress. I can't explain to you how much joy it brings to us to go to the neurologist and get nothing but good news. Not to mention we love our neurologist at Children's, she has gone above and beyond for us. After my appointment I got to go spend time with my cousins. My Aunt lives in the New Orleans area and she has a little boy and twin girls. I enjoyed getting to swim and play with them. We also stopped at Pizza Man in Covington on my way home. We love that place. If you've never been you should go. You can watch them cook the pizza through the window. I'm leaving you a few pictures of us today. As always, thank you so much for your prayers. Your prayers have helped my family greatly.
Sunday, June 23, 2013
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
Monday, June 3, 2013
My mom has been potty training me for a week now. I am proud to say that in that week I only had 4 accidents. 2 were #1 and 2 were number #2. For the last 3 days I have been going number 1 and number 2 on the potty with 0 accidents. This includes nights as well. I haven't had any accidents at night all week. I even get out of the pool when I have to go. My mom isn't ready to say I'm fully potty trained just yet, but wow I'm pretty close. My family can't believe how well I'm doing with this. It's been much easier than they thought for sure. Me I don't really see the big deal, when I have to go I just tell them. You have to remember this time last year I wasn't walking 100 percent of the time and one year later I'm not only walking and running but now I'm almost potty trained. Wow isn't that unbelievable!!! Thank you God for what you have done and continue to do in my life!!!!