Well since I haven't gotten to blog this week, let me go back. My case was presented to the surgery board on Monday. Dr. Chugani actually called me after the meeting to let me know what went on. I know I've said this before but this Dr. amazes me more and more every day. Not many doctors take the time for his patients as he does. Anyway he said that he spoke with my doctor in Boston.(Who also called me and said he agrees with Dr. Chugani and thinks this is the best option for me. He said that Dr. Chugani is a very bright doctor and any idea of his is a great one.) He also said that the surgery board had a really great conversation about me and that everyone was in agreement that surgery is the best option for me right now. You see we have tried everything possible to stop these seizures. On top of all the medications, we have tried keto diet and an herbologist. So we have truly done everything possible to try to give me some relief. It's always the same story. It helps at first and then the seizures slowly pick back up. Last Monday when we increased my banzel, I only had 20 spasms and I went 5 hours without having one. I have never done this before. So yes we celebrated that day. You have to it was a good day. I wish I could say it continued but no I'm back up to 50 spasms a day. They are still better and less intense but they are slowly kicking back up. I can't even begin to tell you how frustrating it is and how much of a roller coaster it is. Its awful. Which leads me to my surgery date. I will go back to Detroit on November the 21. At that time we will update my MRI and I will get to meet the neurosurgeon. This will give us time to ask him questions and process everything before my actually surgery. We will come home and get to spend Thanksgiving and Christmas with my family. I will then leave January 3 to go back to Detroit. My surgery will be January 5. It will be a two stage surgery. This means I will have my first surgery on the 5th. They will go in and put electrodes on my brain. They will then halfway close me up and record data for 3 days. I will pretty much be sedated those three days while they get the information they need. The fourth day is the second phase of the surgery. They will go in and remove most of the left hemisphere of my brain. We don't know exactly how much until we get the results from the electrodes. The surgery will take about 10 hours. I will then go to the PICU for 24 to 48 hours. Then I will get my own room for a few weeks. We will be gone a total of about 4 to 5 weeks. There are NO words that can explain how we are feeling right now so I'm not going to try. We have decided to take my brother with us. We can't go that long without seeing him. He might not stay the entire time but he is coming at the beginning. I will keep you updated as we receive more information. PLEASE PLEASE PLEASE pray for me and my family. If you want to read about two of my friends who have had this surgery you can click on the links below. My mommy has talk to both of their mommies and they have helped out alot. The little boy Trevy is a little more like me than Charli. Trevy had the left side of his brain removed too. Charli had a stoke at birth so her story is a little different but both of these kids are amazing little miracles.
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.