Getting ready!!!

We are getting ready to leave for Boston. Our flight leaves Sunday at 1:30. It is a direct flight into Boston..Yay!!! We arrive in Boston at 5:55 which is 4:55 Louisiana time. It's just me and mommy and mommy is a little nervous about that. Mainly because she will get the results in Boston all by herself. Thank God for cell phones and skpye. We are staying at a hotel this time because family housing is booked. So yes a $60 dollar stay has turned into $400. We have to do what we have to though. There are several others who are in the hospital longer than I'm going to be in that need a place to stay too. We have been very blessed to get to stay in the family housing in the past. We know everything will work out. I'll keep everyone updated while we are there. I will be admitted on Monday at 1:00 pm. My Pet scan is Tuesday morning and then we will be released sometime Wednesday once we get the results. Please pray that they can find a way to stop these seizures. I really need some relief. Having 100 seizures a day is no fun :( I have to leave you with a happy. My PT was playing around yesterday and decided to put tape on my feet. It has made a huge difference. I'm able to feel my feet better and I'm standing straight up while holding on to things. I've been doing this for a while but I've never stood straight up and been as sturdy as I am now. It's the little tricks that make a huge difference. We are also going to start trying to increase my lamictal again. So tomorrow morning we will increase it by 5 mg. Please pray that the rash stays away. We don't want to deal with that again. Thanks for praying for me and my family. If you don't mind say a little prayer for my brother. He doesn't like it when we have to leave for the hospital. He really is a great big brother. Just look at the picture :)

Goodbye Banzel

I've been doing really well since my last post. I have been on a banzel wean for a long time now. We stopped the wean for a few weeks because we thought it was increasing my seizures but it really wasn't. I just have my good days and bad. I took my last dose two days ago. We haven't noticed much increase in seizures. I may be having about 10 more or so a day but not enough to stay on the banzel. The banzel has been the only medicine that has ever worked for me. I started it last October when I was having over 200 spasms. It decreased them to about 90. That is actually the number we have been stuck on ever since then. Yes they go up and then they go down but on a normal basis I'm having about 90 a day. We just assumed it was the banzel still but we were wrong. I'm totally off of it and we haven't noticed any change in seizures. We go back to the neurologist in New Orleans in September. She will then start the vimpat wean. The only two medications I'm on right now is vimpat and lamictal. We are ready to get me off the vimpat because we haven't seen any change since we started this medicine. I'm only on 15mg of lamictal. We are stuck at that number due to the medication reaction that I had. We will start trying to increase it a little slower August 1. If I break out again we will stop it all together. Right now I'm on the least amount of medication that I've ever been on and guess what, I'm progressing more than ever right now. We always thought that the medicines were slowing my progress down and now we know for sure that they are. I don't think we will ever understand the medication thing. The only thing that explains everything is our faith and prayers. We believe that God is watching out for me and helping me fight this battle. Which leads me to what I've been doing this past week. I've been talking, talking, talking. I've been able to say bye, bye, da da, and ma ma for awhile now but only when I want to. I never would mimic you. Which in speech therapy is a problem. In fact my speech therapist decreased my time because I wasn't progressing. I know it doesn't make much sense, but it's an early steps rule. Please don't get me wrong, we love our speech therapist. She has gone above and beyond for us. That's why I'm glad to say that I've done nothing but progress in the speech area this week. I'm mimicking everything. I mean everything. My brother's laugh, my brother's screaming, ma ma, da da, bye bye, vowels sounds, and hand movements. My mommy and daddy are so proud of me. I get super excited when I mimic them. I've been trying for so long and I finally got it. I'm also getting up on my knees and rocking, rocking, rocking. Mommy thinks I'm going to take off any day now. Other than that I've been having lots of fun this week. My Paw and Mar took me camping. We had lots of fun. My mommy and Shelby took me down the water slide at the campground. It was so much fun. I would start kicking my feet and laughing when we started to go again. I left you a picture of my mommy and I coming down the slide. Just look at that smile on my face. I also loved splashing in the water at the splash park. I sat and played with my Mar and my brother for a long time in the water. The second picture is of me splashing at the splash park. So as you can see I've been very busy this past week. I leave next Sunday for Boston. We are getting really nervous about this so please pray for us. We really want these seizures to stop. I don't know what it's like to go a day without seizures. Everyday my brain is attacked by this horrible monster. Even though I'm attacked daily, I continue to stay strong, to fight, and to progress more than expected. Thanks everyone for praying for me. Your prayers are the reason I'm doing so well. I love each and everyone of you dearly for the support that you give me.

Boston dates and getting stronger.

We finally got our dates for Boston. My mommy and I will be leaving July 31. I will be admitted for a 48 hour EEG on August 1. I will have my PET scan done August 2nd. Then I will be released August 3rd and I will come home August 4th. My daddy is going to stay home with my brother this time. So it will just be me and mom but we will be fine. Boston has become our 2nd home so we know how to stay safe. Other than that I continue to make progress everyday it seems like. I've always been able to get into the crawling position with assistants. Well just look at my picture. I'm doing it all by myself. No rice and no one making me. Wow this is huge progress for me. God is truly awesome.

Medication reaction/new tricks

Things have been crazy the last couple of days. I had a bad reaction to the lamictal. I broke out in a rash. It was horrible and I was miserable. My neurologist called to check on me twice a day. So you know it was bad if the neurologist was calling twice a day. We stopped the lamictal and with 48 hours the rash was gone. We have started the lamictal again and so for so good. We went back down to 15 mg twice a day. We will increase it again in 2 weeks but this time only by 5mg instead of 10mg. If I break out we will stop using it. So we will see how I do in two weeks. I still do not have dates for Boston. My orders are in and we are waiting for the hospital to call and schedule it. It is taking longer than expected because we want to have both test done while in the hospital instead of having to go twice. I will let you know dates when I find them out. Thanks for praying for me. I'm leaving you a video of me shaking my head yes. I'm also leaving a picture of me holding on to the fence and standing. I'm also pointing to my head when you ask me where is my head. I will have to get a video and share that soon. So even with the horrible rash, I'm making progress. I'm such an amazing little guy. My family is so proud of my development.

Neurology Appointment/Back to Boston

My appointment at Children's in NOLA didn't go as well as expected. We got there and everything was going fine. We talked about my 3T MRI results and the test that I need, medications, development,etc. She then told us that they could not do the PET scan that I need at Children's because they do not have the equipment. So mommy started calling other local hospitals to see if we could find someone that did PET scanning. The problem isn't finding a hospital with PET scanning. Several hospitals have that. It's finding a hospital that can do PET scanning on a two year old safely. Well she found one at Our Lady of the Lake Children's Hospital. Seemed perfect but of course they can't do it without orders. We knew this and didn't think it would be a problem. So mommy called my neurologist and she said she can't write the anesthesia orders that are required because she is not affiliated with that hospital. Yes we could go see another neurologist at Our Lady of the Lake and then if that neurologist will do it, he can write the orders. We don't want to go to another neurologist. Especially after some of the things that Our Lady of the Lake told us about PET scanning. It's just not worth it. I have to go somewhere that I trust and know that the test will be done correctly and accurately. We are doing the test to see if I qualify for brain surgery. Someone who does this on a regular basis needs to do this test and evaluate it. So with all of that said we are going back to Boston Children's for these test. They evaluate kids daily for surgery and we know that we will be in the best hands there. My mommy was so mad yesterday because we can't get the test done here that we need. After she talked to one of here friends she realized it is just part of God's plan. We believe that he wants us in Boston and that's where we are going. I will know definite dates later today or sometime tomorrow. It will be within the next month. I'll keep you posted. I have to share this verse with you. Our preacher talked about it this week in his sermon and it has stuck with my mommy all week. Just knowing that He is our strength helps us get through the tough times.
Psalms 27:1- The LORD is my light and my salvation; whom shall I fear? the LORD is the strength of my life; of whom shall I be afraid?
Please continue to pray for me. Love ya, Jadon

Test Results

We got my test results back this morning. My MRI is not normal anymore. When we did it in October, they said it was normal but questionable in one area. Well like they expected my left hemisphere is were the problem is located. My right hemisphere is normal. My left hemisphere is significantly delayed with more water than I'm suppose to have and less fat. This means possible dysplasia but we can't see on MRI due to the excessive water blocking the white matter. So we are going to come home and get a PET scan done as well as a 24 hour video EEG to see if I qualify for surgery. The neurologist didn't give us much hope that medicine will ever help me. I have already had 2 rounds of ACTH, 2 rounds of prednisolone, IV steroids, topamax, keppra, clobazam, clonazepam, trileptal, vimpat, banzel,lamictal, and the ketogenic diet. Of those therapies 5 have increased seizures, others have done nothing, and one helped but then stopped after a while. So based on my history of anticonvulsant medicines, it is not likely that we will find one to control my seizures. We will continue to try though. With God all things are possible. He basically told us today that surgery would probably be my best option if the PET and 24 hour EEG reflect the MRI. We don't really know what to think about this. Yes it would be awesome if they could go in and remove the part of my brain that is causing all this but it is very scary. We know that God will continue to direct our path as I continue on my journey.