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.

Wednesday, February 8, 2012

The question everyone keeps asking and my hospital results.


So we made it home from the hospital. My second set of blood cultures came back negative. They really do not know why I was so sick. They do know the antibiotics knocked it out. They contacted infectious diesease and they decided I probably had some kind of blood infection. We spoke with my neurosurgeon and he said that this happens sometimes after surgery. The reason I got so sick was because I picked up adno virus along with the infection. So after lots of sticks, lots of test, and lots of antibiotic I am better. They sent me home on two very strong antibiotics. We did have a scare when we got home. I started vomitting. They wanted my mommy to bring me back in for IV zofran but she said no way. She gave me oral zofran that she had left over from my surgery. After 4 doses I was finally able to hold my meds down. I am just picking up every little thing. They said I must have caught a stomach bug while in the hospital. We are praying that I stay well and out of hospitals for a very long time. The great news is I still have not had a single seizure through all of this. My neurologist said this is great news for me. I have made it 4 weeks with no seizures. Again, its totally amazing. My life is so much better. I continue to make huge progress. My speech is my biggest gain so far. My speech therapist came yesterday and could not believe what I was doing. She said she had been working on all of these things and I wouldn't do any of it. Well yesterday, I did every sound she asked. I said almost every word and if I couldn't say it I sure did try. My therapist said I'm doing so well with speech that we do not need to do sign language any more. I need to use my words to speak. WOW, WOW, WOW!!!!! That is so exciting. It took us over 2 years to get me to say 10 words and now I'm saying over 20 in just 4 weeks. Our God is so awesome!!!
I'm going to try to answer the number 1 question I get asked. What do they think my outcome is going to be since I had the surgery? Well in order to answer I have to go back to a month ago. At the time I just couldn't tell anyone, it hit me way to hard. Once they got the leads placed on my head and saw just how many seizures I was having we got horrible news. The doctors told us that my seizures were continuing to get worse. They said there are no other medication to try. We had tried everything. They told us that children who have that many seizures and continue to get worse usually don't make it past 10 years old. Talk about scare you to death. With that said we really didn't have much of a choice but to do the surgery. My family wanted to give me my last chance at getting better. We knew God had sent us to Detroit for a reason and I think everyone who has been keeping up with me knows that this was all God's doing. So to answer the question. It looks very great for me. They said I will learn to walk, to talk, to interact with people, I will be able to learn, my cognitive skills will increase, and I will live much longer than 10 years. They do not know how much damage these seizure did to me the first two years of my life but it looks very promising that it didn't damage my right side. The doctor told us that we just have to hope that the right side doesn't come back to haunt us. He did say that he did not think that it would but we need to keep a close watch on it. My family believes that God has healed me and that I'm going to be just fine. So I hope that kinda answers the question. We really don't know the entire long time results but we do know that I will have a much better life now that the seizures are not getting in the way. I have my first post surgery EEG on February the 16th so please beginning praying that it will be normal. Please continue to pray for me. I'm so blessed to have so many prayer warriors :) I'm leaving you a picture so you can see how great and happy I look :) Love ya, Jadon

3 comments:

Dawson said...

Such similar stories... Although the path to get there was very different, the endings seem remarkably the same. We have watched Dawson over the past year and a half of seizure freedom blossom into what the world would descbibe as just a "normal" little boy. We thought we would never get there. God had a plan for Jadon and you were faithful to allow him to execute that plan exactly the way HE designed it. Your reward is what you see in front of you today. A miracle!! Enjoy every single day of it as I know you will. God has given you a great testimony for him and I encourage you to tell others about this great miracle

Unknown said...

God bless you Jadon. God bless your family too. So glad to hear you're doing so well. Keep on truckin little Jadon. Our prayers are with you.

Norma Frick said...

Everyday I'm thrilled when I see how God is apart of each moment, each person, each experience we encounter. HE is in ALL. Since the begginning of reading your blog, your family, doctors, friends who have served you, anyone or anything, have been prayed for. God's plan will always be what is best, and I pray that His best is for Jadon to be completely healed showing the power of our Almighty God.