We have our surgery date.

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.

Trevy



Charli

Surgery Update!!

Alot has been going on since my last post. First, I'm still having seizures and I'm on my full dose of vigabatrin. We did start another medicine. We put me back on banzel. Banzel is the only other medicine besides vigabatrin that has helped me. We thought maybe the two together would help. Well it has help and we actually have more control of my seizures than ever before. I'm having about 60 a day and they are not intense at all. It's very hard to know if I'm having one or not. Though we are excited about this its still not acceptable to have 60 seizures a day. So my mommy has been calling doctors and talking to them about the surgery. She even talk to a mommy whoes child had the surgery. If you look at the end of the post you will see the questions that my mommy ask Dr. Chugani and the answers he sent. She emailed him at 3:30 one afternoon and he emailed back by 7:00 that night. He is awesome. We do believe that God has sent us to him. When we first started looking for doctors to see my mommy and daddy looked in to going to see him or this doctor in Boston. We went with the doctor in Boston. We were in the hospital and actually met a different neurologist than the one we went to see. We liked him so much that we stuck with him and not the other. And would you know a year later he referred us to Dr. Chugani. That is why we believe it was meant for us to see Dr. Chugani. Of all the neurologist out there, there is no way this is just coincidence. It is definitely a God thing. So what is the plan. We have decided to go ahead and schedule the surgery. We will have our final date by Wednesday of this week. It is looking like it will be sometime in December or January. We will then make a trip to Detroit to update my MRI and to see the neurosurgeon who will be doing the surgery. We could do this the day before the surgery but we need time to discuss our questions and think about them. My mommy and daddy will think, pray, and get lots of opinions before they let anyone cut into my brain. We also talked to our neurologist in Boston. He said that no idea of Dr. Chugani's is a bad one. This made us feel a little better. He also said that Boston is doing a research study that can tell how much of the motor function has transferred to the right side. They use a machine to put next to the hemisphere. The machine cause the muscles on that side of the hemisphere to move. If both of my arms and legs move we will know if it has transferred. We are in the process of trying to get into this study. We would feel much better about the surgery if we can get this test done. It amazes me the test they can do these days. I'm asking you to pray harder than you ever had for me. I can't tell you how difficult of a decision this is for my family. We are praying and trusting that God will continue to lead us in the direction He wants us to go. I want all of you to know that we are planning my surgery and doing all the prep work but we may not do the surgery. Everything has to fall into place and we have to feel 100% that this is what God wants us to do. That is why we are asking for prayers, prayers, and more prayers. Thanks for all that you do for me and my family. I love you all and here are the notes from Dr. Chugani:

SEE ANSWERS BELOW

> Dr. Chugani,
>
> We recently came to Detroit to see you. My son's name in Jadon Pailet.
> We started Sabril the day after we left your office. It has helped but we
> are still seeing about 80 seizures a day. With that said the seizures are
> not as intense as they were before Sabril. Since they are not as intense,
> Jadon has learned 4 new animal sounds and is crawling a little bit. I
> know
> the next step is surgery but I have a couple of questions.
> 1. I'm worried about him regressing after surgery. My husband and I have
> been researching and it seems most children are worse off than Jadon when
> the surgery is done. What is the likelihood that he will be worse after
> surgery than he is now?

RARE TO BE WORSE AFTER SURGERY. IF SEIZURES CONTINUE, SOONER OR LATER IT
WILL TAKE A TOLL ON THE BRAIN

> 2. I read an article about brain surgery which said you can actually numb
> the hemosphere and then check for speech, memory, and motor. Is this part
> of the procedure that ya'll do?

THE GRID ELECTRODES THAT WE PUT WILL CHECK FOR VITAL FUNCTIONS SUCH AS
MOTOR. THE OTHERS ARE NOT AN ISSUE AT THIS AGE

> 3. When are we looking at doing the surgery?

WORK THAT OUT WITH SARAH

> 4. What part of the brain are we talking about removing? The entire left
> hemisphere or only the 4 parts that did not form correctly? I know we are
> not going to touch the motor cortex unless necessary.

WHAT IS REMOVED DEPENDS ON WHAT THE GRID EEG SHOWS

> 5. This is not a surgery question but just wanted to ask. Jadon was
> on Banzel. The banzel helped but didn't control the seizures. We took
> him
> off banzel because we thought it was causing the other medicine not to
> work. My question is does banzel work well with Sabril? I'm just
> thinking
> maybe we can get some more control if we put him back on the banzel.

THE 2 CAN BE USED TOGETHER. TRY IT IF YOU THINK IT MAY HELP. HAVE WE
MAXIMIZED THE SABRIL DOSE? HOW MUCH IS HE TAKING AND HOW MUCH DOES HE
WEIGH?

:(

The title explains how we are feeling right now. I'm on day 3 of my final medicine increase and I'm still having seizures. My mommy has talked to my neurologist in Boston. He is in the process of talking with the neurologist in Detroit. He will then get in touch with my mommy and let her know his opinion on the surgery. I have 3 neurologist and we want them all to agree with the surgery. I know it's seems crazy that we are being so cautious. Most people say go ahead with the surgery if it could stop the seizures. Well easier said than done. You see it is a very dangerous surgery. On top of that they can't tell us that it will definitely stop the seizures. They are pretty sure it will but can't be 100%. You also run the risk of taking something out that I'm using which means I would regress or even lose function of my right hand. If I do regress they are hopeful that I will regain the skills. It's just alot to consider and it makes us sick at our stomach everytime we think about it. We are spending lots of time praying right now. I have to be honest and tell you it's hard to not be mad at God right now. Why do I have to suffer? Why doesn't the medicine help? Why are we in this situation? Why is it that my family has done everything possible and can't get me any relief? We have to sit down and think about how far God has brought us and how He has never left us through this all. My mom and dad will never forget the day the neuro in Detroit walked in and said wow he is very high functioning considering his situation. This tells us God is with us even though we don't understand why I'm having to go through this. Please continue to pray for me and my family. It's very hard for my mommy to have to leave me for work right now and she is having a hard time. Also pray for the decisions we are having to make. Keep praying for these seizures to stop. We know that even though the medicine isn't working God can still heal me. We are continuing to trust God as I continue to fight this battle. Love you all, Jadon

Eye appointment

I had my eye appointment today. After a 3 hour wait they said my vision is fine. I have to go back in 6 months to see if there has been any change. Other than that my seizures are still the same. We have to talk to the Dr. In Detroit tomorrow. II will let you know what he says. Please continue to pray!!!

Getting better!!

Well I'm still having seizures and we are on our 3rd increase with vigabatrin. Even though I'm still having them, they are better. They are very little. You have to be holding me in order to know if I'm having one or not. I'm having about 80 a day still. This is an estimation because they are very hard to count because they are so little. We will increase the medicine one more time before we have to make some huge decisions. Please continue to pray for guidance. I do have some good news though. We all know what happens when my seizures get better so here it is. I have learned 5 new animals sounds this week. I now know 6 animals sounds. I'm also making all kinds of sounds. I can say the p,m,b,d,s,k,h and all the vowels sounds. I'm even saying a new word. I can call my brother Jacob. I try to put the cob on the end but it's mainly Jay Jay.You don't know how amazing this is, we have been working on my speech for so long. At one point I was not progressing at all in the speech area. We were very concerned that I may never make these sounds and look at me now. I'm continuing to prove them wrong. My motor skills are also better. I'm using my pointer finger. I'm sturdier when I pull up and I can crawl. My mommy has to make me do it because I would rather scoot but I can do it the right way..LOL Please continue to pray that I keep progressing and that this medicine will take control of these seizures. There is still hope that it can control them but time is running out. Also if you do not mind, please pray for my friend Liam Stine. He has IS like me and is in the hospital. Please pray for him. I love you all, Jadon