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.
Monday, June 2, 2014
I'm excited summer is finally here. I get to stay home with my mommy and brother all summer :) I had a great PreK year. I had wonderful teachers, therapist, and paras. I made HUGE gains. I surpassed the goals set on my IEP ( individual education plan). The most exciting test was my getting ready to read test. This test was given at the end of the year and I scored a 20 (14-20 is considered average). My math test puts me a little below average but not by much. Here are some things I can do. I can sequence stories. I can name the characters, setting, and events to a story that is read to me. I can identify the beginning sound of a word. I can orally count to 30. I can count objects up to 20. I'm finally able to keep up with my peers while walking in line. So I'm ready for Kindergarten. I don't want to go to Kindergarten but I'm going to have a great teacher next year. I saw my neurologist today at Children's in NOLA. We brought her a copy of all my end of the year test and she was amazed at the progress. I'm a miracle to her as well as everyone else. She loves to hear about my progress and she always has fun toys for me to play with during our visit. We are making a small dosage change to my focalin but that's about it. She did confirm that fine motor is so hard for me because I'm having to teach myself how to write left handed. I'm not a natural lefty. Can you imagine having to learn to do everything with your left hand if you are a natural righty? Well its hard for me at 4 but we know it will get better the older I get. She says I'm doing wonderful and we will see her in another 6 months. Neurologist appointments use to be so stressful for us. They are now enjoyable and full of progress. We are so thankful for that. My mom said she can remember at one of our very first neurology appointments a little boy running up and down the hall as she sat in the chair holding me while I had seizure after seizure. She can remember wondering if I would ever be able to walk or run. Well I did both at the hospital today praise God. It's been a long journey but the journey is far from over. It's actually just beginning. We can't wait to watch me grow, learn, and overcome the impossible!!! Thanks for all your prayers! I hope you all enjoy your summer. I know I will!! I will blog again in July after my 3 week intensive therapy. Please pray we get great results from it.