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.

A day to get our minds off things.

We decided to have a little fun today while we wait to see the doctor tomorrow. We needed to get out to get our minds off of everything. We went to the New England Aquarium this morning. We had a great time. We saw lots of fish, penguins, and seals. I slept through the seal show. I liked trying to catch the fish the best. After the aquarium, we came back to the room and took a nap. After our nap we went to Mission Hill Park. I loved being at the park. I even found some dirt to dig in while my brother played in the spash park. I'm leaving a few pics of our adventure today. My appointment with the neurologist is at 9:00 am tomorrow that's 8:00 our time. I will update as soon as I can. Thanks for praying.

MRI done now we wait.

Yesterday was a long day but we made it. Our flight left at 6:00 am and we walked on the plane at 5:59. Mommy had me on her hip and Jacob holding her hand running to the runway while daddy got the bags. It was crazy but we made it. Once we got to Baltimore we had time to get a snack and then it was time to load again. We got loaded and on the runway and then they announced we were under an hour delay due to weather. So we finally made it to Boston an hour later than expected. We got to the room and we all took a nap. We had time to go eat dinner at the harbor last night. Everything is so beautiful here. The weather is great this time of the year. In the mid 70s during the day and not cooler than 68 at night. Now on to my test. I made it to the hospital this morning around 10:30. They took me back shortly after 11. Everything was going great and they said they were behind an hour. Well mommy put me to sleep and I slept until they took me back. They gave me my sleepy medicine while I was asleep. When I woke up in recovery my mommy was already there. I did a great job and woke up the first time they tried to get me up. Now we have to wait to find out the results. We see the neurologist first thing Friday morning. I will update you as soon as we know something. The pictures I left are of my brother, mommy, and me at the entrance to the hospital. The other is of my brother and me in our room at the Devin Nicole house. Notice our shirts. My daddy and brother bought it for me at Fenway Park today. I want to thank you for all the support. We can definitely feel your support here. Thanks for praying and please continue to do so. I love you all, Jadon

Tomorrow is the day.

We leave to go to Boston tomorrow. Everyone is going this time. My brother is so excited about flying in morning. Our flight leaves at 6am from New Orleans. It's going to be an early morning. We will arrive in Boston at 12:15. Once we get to the house we will probably take a nap. Then we will have time to go do something tomorrow night. My 3T MRI is Wednesday at 11:15. That is 10:15 in Louisiana. If you think about it, please say a prayer for me around that time. We have the day off Thursday. If I'm feeling ok, we will go do some touring in Boston Thursday. Friday we meet with the neurologist at 9:00. He will explain the results of the MRI and then tell us what he thinks we should do next. We will have the rest of the day Friday to go and do some things. We then come home Saturday. Please pray for safe travel as well as great results. I will keep everyone updated while we are there. Thanks for your prayers.