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.

Saturday, June 28, 2014

Unexpected but needed update!

I know I said I wasn't going to blog until after my 3 week therapy but I have a few new things and a prayer request. First of all I'm loving every minute of summer. We have been spending a lot of time at the library. We are part of the summer reading program and we have almost met our summer reading goal! I love books and now that my brother can read, he reads them to me every night. We haven't gotten to swim as much as we would like but we are finding time to swim. Swimming is such great therapy for me. Speaking of therapy I have been going every Thursday for my 2 hour therapy. I haven't been doing all that great. I've started to not want to do therapy. So please pray for us. We start my intensive 3 hour a day therapy Monday through Friday for 3 weeks on Monday. This is going to be hard on me but the outcome is going to be worth every minute. I'm still getting stronger everyday. I can now climb the ladder to get into the playhouse. I can climb up on the gate of the fence to see my horse. I can also push a buggy at the grocery store with both of my hands while controlling which direction it goes. I'm very aware that my right hand does not work correctly. I've even cried about it and it just breaks my moms heart. Mom says we are working on making it stronger and that I can find other ways to do anything I want. I try so hard to use my righty. I rarely have to be reminded anymore. You will often see me using it as an assistant hand without being told. I also received some not so great news this week. I have to have my tonsils removed. We are down for surgery on August 1. This will give me just enough time to recover before I start Kindergarten. Yes I know its just a simple surgery, but everything is bigger when it comes to me. I had a hard time when I had my adenoids removed and I was very close to having to stay the night. We are hoping I will do better this time but I hear tonsils are little more involved than adenoids. So your prayers are appreciated. I hope everyone is having a great summer. We are in the process of moving out of our house. We are suppose to close on July 15. As you can see we are staying busy busy this summer!!! Thanks again for the prayers. Love, Jadon

Monday, June 2, 2014

It's Summertime!!

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.