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.
Thursday, May 30, 2013
It's officially summer and I am loving every minute of it. I get to spend everyday with my mommy and brother Jacob. We go swimming almost everyday. I love it and its great exercise for me. We are really focusing on getting my right hand to work better this summer. I'm trying really hard but its just not cooperating. The good news is I have a great attitude about it and I always try. I will get it eventually. My mom is also working on potty training me this summer. We are on day 3 and I haven't had an accident in two days. I was able to go to wal mart, master chef, and to Jacob's t-ball game in my big boy undies. I'm really excited about being able to wear my undies and my family is very proud of me. We are hoping by the end of the summer I will be able to go to school fully potty trained. Speaking of school we received a letter in the mail today saying that I was selected to participate in the PreK program at Loranger Elementary. We are very excited about this. I will be in a regular education prek class. Right now I'm learning so much from my peers so we know this is going to be a great thing for me. As always thanks for praying for me. I'm doing fantastic!!! Love, Jadon
Tuesday, May 7, 2013
My mommy talked to my neurologist in Detroit today. They decided that I do not have to go back to Detroit this summer. I'm doing so well that he said we can wait another year before we go back. The main reason we were going back was to let him evaluate my hand. I'm still not using it as much as we would like but I can use it and will use it when I want to. So we will wait another year and see how I'm doing then. We just aren't ready for surgery yet and feel like we should just wait. In the meantime my neurologist said to let him know if we have any problems in the next year. Thank you all for your prayers. We are very excited that I'm doing so well and can skip this trip.
Saturday, May 4, 2013
So I've been off my medicine for almost 3 months now. I continue to do great and I'm still progressing along. A few weeks ago I was in my Uncle Mark and Aunt Laurens wedding. I walked down the isle with my big brother and did exactly what I was suppose to do. Mommy was so proud of me for being a big boy like my brother. I had my evaluation for pre k a few weeks ago. I did better than my mom thought I was going to do. The lady asked me my name and I said Jadon, she said Jadon who? and me with my funny self said Jadon bug a roo. LOL That's what my mommy calls me. She then said that's not your last name what is your last name Jadon what and I decided I should tell her Pailet. So I was able to tell her my first and last name and my age. I was able to identify every picture she ask me to identify except a leaf. It was a funny shaped leaf and it didn't look like the leaves around here for sure. There was a picture of a girl at the bottom of some stairs and a boy at the top of those same stairs. The lady asked me what the girl was doing and I said going up the stairs. She then asked me what the boy was doing and I said going down the stairs. Yeah I'm a smarty pants. I also had to identify some body parts and I was able to identify them all. They were tricky ones like the heels of my feet, my back, my chest, and my chin. I still got them all right. She asked me things like what does an airplane do and I said fly in the sky and what do you do with a book and of course I said read it. I also had to look at a picture and say the sentence that the tester told me. And guess what, I was able to do it. So pretty impressive. These are a few things I had trouble with. I was able to draw a straight line but not a circle. I was able to identify 2 colors and not 4. I'm having trouble with my colors for some reason. We are actually going to check to see if I may be color blind. I also couldn't hop on 1 foot or jump. If you really think about most the things I had trouble with it was motor related. That is because the right side of my body doesn't work as well as it should. Oh and remember I haven't been walking a full year yet. So basically I'm doing phenomenally well. I'm asking that you all pray I get into prek. I really need it for the social aspect and I'm ready cognitively. Mom is a little worried I'm not because I did well on my test and its income based and since my mommy and daddy both work our income is higher than most. I do get points for having an IEP and they have to take 2 kids with special needs so I'm hoping I will be one of the 2. My speech therapist at school also did a speech evaluation on me and I scored 2 years 10 months receptively and 2 years 9 months expressively. My age is 3 years 8 months. If you remember my expressive was much lower than my receptive and it has caught up!!!! WOW before long I'll be on level for speech I'm catching up in time :) Other than that we are just waiting to get our date to Detroit. We should have our final date by the end of next week. Thanks for praying for me God continues to amaze us with his healing powers. I've heard people say you don't know how much God has blessed you and all mommy says is YES We DO!!!! Watching your child suffer for two years and not being able to help them is horrible and something my mom doesn't wish upon anyone. We are grateful everyday for the miracle God has done in my life!!! I'm attaching a cute video of me running in my shoes without a brace on. You can just see the joy everywhere!!!!