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?