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.