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, December 30, 2013

December update!!

I continue to do amazingly well. I did have my adenoid surgery and I did great. I had a little bit of trouble holding my oxygen levels in recovery but I finally pulled through and I was back to my normal happy self. I am such a joy to be around. I wish everyone could see in person how well I'm doing. I have such a sweet personality and I say please and thank you without having to be told. I can get complete strangers to talk to me and play with me. Don't worry I know that I can't go with strangers, I'm a mommies boy and make sure she is by me. One of the best things about talking to strangers is they don't realize that anything is wrong. They have no idea of my past. They think I'm a normal 4 year old. And yes in lots of ways I am like a normal 4 year old. In fact my language skills have basically caught up. The main thing others notice is my speech. I'm still working on my articulation skills, yes you can understand me but you have to listen close as I don't say all my sounds correctly yet. They continue to improve but I still have some work to do. Not all but some people will say something about it or say my child is having trouble with articulation as well. My mommy has gotten to where she uses this opportunity to tell my story. Hey you asked so you get the real story. 100% of the reactions so far are I would have never known that if you wouldn't have told me. Look at him, that's amazing!! Speaking of amazing we leave in 2 1/2 weeks to go back to Detroit. God always provides and we are ready for our trip. A wonderful family let us use some of their flight points to schedule our flights. Talk about relieve some stress. I'm so very thankful for this. My Aunt Mendy will be going with us to Detroit now. My dad is going to stay with my brother so that things can stay as normal as possible for him. Our rental car price has gone from $330 to $69 total. Now we wait until the day before to make sure we get into the Ronald McDonald house. I'm not gonna lie. We are nervous about this appointment. The EEG that will be done will give us lots of information as far as my future. We believe its going to be normal but its always a bit nerve racking when you have to have an EEG. By the way this will be my first EEG medicine free. We will also know if I will need surgery on my hand. We hate that I may have to have another surgery but we have to do what is best for me. This surgery will not be nearly as bad as brain surgery. So please begin praying for my trip!! I want to share a video of me using my right hand so you can see how I can use it. I can use it and I try really hard. It makes you sad when I say righty doesn't work right :( The main problem is opening and closing my hand. I have figured out that I can use my left hand to open my right hand and then I can grab things. My hand wants to automatically close so I can grab things. Once I grab it, I have to use my left hand to release it. As far as my left hand, my motor skills are getting much better. I can now draw a circle. I can color, stack blocks, and do much more. I'm leaving a picture of the blocks I stacked at school. I'm so thankful to have therapist at school that send my mom videos and pictures like the ones below. The gingerbread house picture is one of the projects I did with mom since we are off of school. If you look close you can see how well I did. I was able to pick up the little candies to put on the roof. I had a blast decorating it. Other than that we are really enjoying our Christmas break. Christmas was so exciting this year because I got it. I understood every part of it. I knew it was Jesus birthday. I was able to count down the days until Christmas. I sang Christmas songs. I made cookies for Santa. I woke up Christmas morning asking if Santa came last night. It was such a blessing celebrating the birth of our Savior. We are less than 2 weeks away from my 2 year seizure free birthday. Yes you are reading that correctly. 2 whole years since my last seizure. Thank you God!!!