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, November 21, 2011

Detroit results

We made it to Detroit. I had my 3T MRI today. The doctor said it looks the same as my last one. This is good news that nothing has changed. I did really well with the sedation. I woke up before the nurse tried to get me up. I immediately drank my juice and ate some crackers. The nurse said I would probably sleep most of the day and not really eat alot. Well I've been up all day and I have done nothing but eat. LOL. I also got to meet my neurosurgeon today. He is amazing. He answered almost all of my mommies questions on her list before she could ask them. He said that he has been doing brain surgeries for over 18 years. He said in that 18 years he has only lost one. That is bc she was from Australia and had another condition that they were unaware of and she had complications due to that. He also went over the surgery procedure from start to finish. He said they will do the first surgery on the 5th. They will place the electrodes on and they will put in a drainage tube. I will be in the PICU for a day and then I will move to a room. I will be able to play and I will be fully awake. They will get the information they need and then will decide what needs to be removed. He said he can't tell us for sure but he also believes that alot of my functions have transferred to the right side. He said this based on the tissue that isn't working on my left side. We know this bc of my PET results. We will know alot more once the first surgery is done. I will then have my second surgery which will be 7-10 hours. They will have to give me blood during the surgery :( After surgery I will go to the PICU. They will monitor me for blood clots and any complications. He said he has only had 3 patients who have had this but it is a side effect and it needs to be watched in case they need to go back in. I will then go to a room. I will be on IV antiviotics to help prevent infection. I will still have two drainage tubes in. Hopefully within three days circulation will pick back up and they can be removed. Sometimes they do have to put a shunt in. I will also have a metal plate and 3 screws. He said that the bone will actually grow over the screws within 3 months. Kinda amazing. If everything goes well I'll get to come home two weeks after surgery which will leave us here for three weeks. We did learn that we are not ready for this. I don't think we ever will be. It's
very scary but we trust these doctors. I can't explain it but it just feels right. I know it's what has to be done and I know God has sent us to this place. Again I can't explain how intelligent these doctors are. They are amazing and I trust them. Oh one more thing. He said depending on which surgery we decided to go with there is a 90 % success rate. Pretty amazing right. I might regress some but he said it will come back. Even my speech. My mommy said she will be very sad if she doesn't hear me say momma after surgery but if it helps in the long run it will be worth it. Keep praying everyone. Though we aren't ready, the waiting is so hard. I saw this on the refrigerator at the house today "God didn't say life was easy but he did promise to be there with you every step of the way." Love you all, Jadon

Thursday, November 10, 2011

Seizures, sick, neuro appointment, prayer request

My seizures haven't been the best lately. I'm having about 80 a day again. Surprise surprise. We are praying that they will just stay at 80 until surgery date. I can a least function at 80. When they increase to 150-200 is when the regression starts. I think this is just a reminder of why we need to do the surgery. My mommy and daddy say they have to try surgery. It's only fair to me so that I can have a chance. Even though I can't talk you can hear it in my cry " Mommy please make them stop, mommy what's going on, help me mommy". So yes I'm saying the seizures that make me cry are back. On top of all this I've been sick. Mommy brought me to the doctor Monday and they put me on antibiotic for a sinus infection. Then Tuesday afternoon I started running a high fever. We thought it was related to the sinus infection but no I broke out in a horrible rash today. I also have ulcers in my mouth and fever blisters on my mouth. The doctor said it was hand, foot, and mouth disease. I probably picked it up in the doctors office when I went to get my antibiotic for my sinus infection. I can't catch a break right now. Hopefully this rash will go away soon and I can get better. Ok so enough of the bad stuff. I went to see my neurologist in NOLA Tuesday. She did receive the paper work about my surgery. She agreed with the surgery. She said she has done everything possible for me. She also agreed that I can't continue to develop unless we stop these seizures. She also said I have lots of potential if we could only get them to stop. She said that she would talk to the head of neurology about doing my therapy after surgery in NOLA. Well she walked out to write my new prescriptions and guess what the head of neurology was in the clinic. She agreed to let us do therapy in NOLA. She also agreed with the surgery. She then introduced us to the lady in charge of therapy in the hospital who also just happen to be in the clinic. So yes God was definitely looking out for us that day. My mommy was very nervous about the appointment and everything was perfect. Since we are going to do the therapy in NOLA we may only have to stay in Detroit 3 weeks. It all depends on how I do after surgery. When I'm stable enough to transfer we will transfer. We are very excited about this. Please continue to pray for us. We are definitely feeling your prayers. Everyone is being so helpful to us and we are so thankful to have all of you in our lives. I'm attaching a picture of a little boy that was just diagnosed with infantile spasms in our area. Please pray for him. He is the same age that I was when I was diagnosed. My mommy has been talking to his mommy. We are praying that the ACTH that he is on now will stop his seizures. One last thing. We are in the process of making a prayer blanket for me to take to Detroit. If you would like email my mommy at monica.pailet@gmail.com with your prayer and we will put it on my blanket. Thanks again for the prayers. Love you, Jadon