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, April 30, 2015
As you can see in the picture, I have been growing like crazy these last couple of months. As far as school goes I continue to progress and learn new things daily. I even tested out of speech language. I only need speech articulation now. Yeah having half a brain doesn't slow me down. I started having problems with my righty leg (this is what I call my weak leg). It started giving me problems at the beginning of March. I went to my brace doctor. He wanted us to see a sports medicine doctor. It was going to take over a month to get in. Well as we waited my foot continued to get worse. It got to the point that I couldn't walk. So off the ER we went. They did x-rays and thought I may have fractured my foot. They sent me home with a splint and told us to follow up with the orthopedic doctor the next week. We went to the ortho and she decided to cast my foot because it was giving me so many problems. The cast was done for 2 reasons. One to stretch my tendon and the other to help my leg rest. I wore the cast for 2 weeks. Once we removed it, I was able to run and jump that very day. I did really well for about a week and a half. It then started giving me problems again. Once again I could barely walk on it. We went back to the ortho. They ran more test and still couldn't find anything wrong. She decided to remove my brace and see if I got better. She thought that I may be overpowering my brace and causing shin bruises. We removed the brace and my foot didn't get much better. I would have days that we thought it was better and then bam I couldn't walk. We finally got some answers today. We went back to my brace doctor. This is the doctor who was able to get me to walk well, then run, and then even jump when others couldn't. We have been seeing him since I was 3 and we really trust him because of the success that we have had with him. He doesn't think I need a different kind of brace. Let me just say if he ordered me a new brace he would make more money. He really wants what is best for his patients. He believes I'm having muscle cramps because I'm growing so fast. The problem is I'm growing rapidly and my muscles aren't able to keep up. The brace is holding my foot up so when I have a cramp I'm unable to get release from the cramp because of the position my brace has my foot in. This then causes lots of soreness to my muscle which is causing me not to be able to walk well. That is why I'm walking on it some and then all of a sudden not able to walk on it. This actually makes the most since to us so far. Is this what is happening? Only time will tell but we believe this is what is happening. So the plan is to go see an orthopedic surgeon in Baton Rouge. That doctor will be able to tell us what to do next. Most probably botox but we will have to wait to see what he says. We are hoping and praying that we found our answer to my leg problems and that I will get some relief soon. If you have ever had a cramp, you know how much that hurts. Oh and to not be able to release it just makes it aweful. My doctors said I'm unbelievable. I have to be in lots of pain and I continue to smile. My family aches for me but we all know this is just part of my healing process. Thank you all for your prayers and I will update again once we see the next doctor.
Sunday, February 1, 2015
I'm so sorry I haven't updated my blog since August. I have been so busy. You know Kindergarten is hard work. The good news is all I have is progress and great news to share. I will go back to August 2014 when I started Kindergarten. I did very well on my entry test into Kindergarten. I scored in the middle of the Kindergarten students. I was in the lower middle but I was in the middle not the lowest. I walked into my Kindergarten class the first day without any problems. I told my mom bye and went right to my chair. I'm growing up to be very independent. My mom walked me to my class the first two weeks and then I asked to go by myself. Mom said if I could show her how to get there, then I could do it all by myself. Well I have been going to my class all by myself ever since. I tell ya I know my way around that school. September rolled around and I started pedaling my bike by myself. My mom would hold the handle bar for me. Well that only took a few days and then I was off. Steering and pedaling all on my own. This is a difficult skill for a hemi child. You don't realize how much cross over your brain does for your body to function. I do not have that cross over so I have to learn to make my body work without it. Well I'm doing an amazing job. October passed and it was a blast. I got to go see Mickey Mouse in Disney World. My dad worked so hard to bring me there. It was such a fun trip. I just love Mickey Mouse. In November, we visited our neurologist in New Orleans. She said I'm doing fantastic. She made we run down the hall. My mom said she can remember hearing a child run down the hall during one of our first visit with our neuro. She couldn't help but wonder if I would ever get that chance. Well not only did I run for her but I read the word that she wrote down on the examine table paper. She was impressed. We made some changes to my focalin. (The medicine that helps me focus). We have actually been able to decrease the amount of focalin I'm on. We started taking juice plus and we cut back on sugar. This allowed us to decrease my medicine. I was just to medicated. Sometimes I would just sit there and not talk. Since we decreased it, I am participating more in class and I'm doing better academically. In fact I'm doing so well academically. I can now read some sight words, I can sound out words, I can tell you the sounds I hear in a word, I can count to 100, I can add and subtract using manipulatives, and my comprehension is unbelievable. You can read a story to me without pictures and I can tell you all about it. It's just amazing. My Kindergarten teacher is awesome and she is enjoying having me in her room. I just love her. We just had my middle of the year test and I moved up in all of them. In fact I was at benchmark in math and below in ELA but not unsatisfactory. I moved from a score of 17 on one of my test to a 107. I needed a 122 to benchmark so I was close. These are timed test so its hard for me to keep up with the speed but hey I did great. When you think of how delayed I was at one time. Such as not walking until I was almost 3 to where I am now at 5. The reality of the miracle we have been shown is evident. In fact I had my 3 year seizure free birthday on January 10, 2015. It has been 3 years since my last seizure. My mom made a video of my progress this year. I'm posting it below for those who have not seen it. Thanks for all your prayers and support. I was reminded today of just how much you all have helped me. On this day 3 years ago, I was admitted to the hospital for 105 fever. It was a scary day but it was the last time I have been admitted to the hospital for sickness. I was always in and out of the hospital and now it has been 3 years since my last admission. WOW!! Each of you have helped us so much on this journey. You never know what life will bring each day. Love each other daily!! I will try to update sooner next time but know when I don't update its all good :)