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