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, January 16, 2012
The Best News Yet!!!
They took my last drainage tube out yesterday. I was so glad to get it out. My head feels much better now. I had a great day the rest of the day. I did get sick last night but it was due to the pain medicine. I do not like the taste of it and it makes me sick. I had my CT scan this morning. There is no fluid build up so I do not need a shunt. We will have to watch for fluid build up in the next few weeks but I should be ok. I lost my IV today and they are not putting another one in. I'm super excited about this. I have 0 cords attached to me :) I'm going to stay at the hospital tonight in order to make sure I can handle all meds, foods, and liquids without IV. If I do well then we will be discharged tomorrow. We will then stay at the Ronald McDonald House that night. If I do ok then we will stay at a hotel by the airport Wednesday night and fly home Thursday. The doctors say it is fine for me to fly. They have had several patients fly home after surgery so we should be fine. I will then be admitted to NOLA Childrens hospital for inpatient therapy for another week or two depending on how I do. Right now I'm pretty weak so it will probably be more like two. Please pray that I can handle all the meds by mouth and pray that I will not get sick. I'm so ready to get out of here. Thanks for praying. The doctors say I'm doing amazing. I know that God is the reason I'm doing so well. All the praise and glory go to Him. Tomorrow makes a week of 0 seizures. I used to have 1400. It's totally amazing that they can take out half your brain and you can do so well. It will definitely make you believe in miracles!!! I've changed my song to How Great Is Our God. He has definitely answered our prayers. Please continue to pray for me and don't forget to thank God for what He has and will continue to do for me. Love, Jadon
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6 comments:
So glad to hear the amazing news! God is surely good!!
A fb friend of mine brought me to this site. Jadon you are amazing! And so is your family. God bless you.
Great news Jadon! So happy that you are doing so well! Praise God! We will continue to pray for you and your family!
So glad you mommie and Daddy and brother have such good news.Take it slow now and don't be too excited when getting back home. Kelly
You don't know me yet but I went to school with your grandmother ros. I had a very bad accident when I was 2 years old. I not only had the right side of my brain removed but most of the skull as well. I had 3 tubes running out of my skull after the surgery. My surgery was very similar to yours and very experimental at the time. I am so very glad that you are doing so well. I have so much metal in my head that a catscan won't take the picture. I have to stay on a very high protein diet--lots of steaks, milk (2 galons per week), roast beef and lots of vegetables. ice cream is always good but make sure that the ice cream is not too cold. you will need plenty of fresh air. I could not laugh or cry because it created more stress on the brain and I could have gone into a seizure. this may not be the same for everyone but better safe than sorry. My parents drove me home after the surgury. back then we did not have interstates but we had to drive real slow like 45 mph all the way home. I don't have a problem with airplanes but I do have a problem with living at higher elevations like Denver, colorado. If i remember anything about diets or traveling i will leave it in a comment for you. I can't talk a whole lot because it wears down my brain energy and makes me tired. you may be sensitive to smells and fragrencies. I did ok in school but I always had a hard time with spelling. Hope to have you home soon. good luck!!
Great news!!! Have a safe trip home tomorrow. I know how wonderful it will feel to walk through those doors and sleep in your own bed :)
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