Finally some results for you!!

Sorry it took so long but my trip to Boston was not a fun one at all. I did great on the plane ride and slept great in the hotel room. The next day is when it started. I arrived at the hospital at 12:00 for a 1:00 admission. Since we were early mommy took me to the cafe to eat. We went back to the admissions office at 12:45. They didn't take me to my hospital room until 3:00. When I got to the floor they said my room wasn't ready. They put us in a holding room until about 4:30. While I was in the holding room they came and got me to put my leads on. I always hate it but I gave them a hard time. I screamed the entire 30 minutes. It was awful. I kept looking at mommy to help but all she could do is lay next to me and hold my hands. As soon as I was done I started pulling at my head. They said that most kids forget about it after a while. Well I didn't forget. I kept pulling at it the entire time I was there. I did get the hat off at one point but they came and put it right back on. This made me really mad. Once we got settled in the room, I fell asleep. I was worn out from all the fighting and crying I did. Things were finally a little better and then they came in for my IV. It was 11:15 at night and I was extremely tired. I don't know why they waited so late but they did. So I started kicking and screaming again. They had to get a blanket and wrap me up so I couldn't fight them. By this point mommy and I were both crying. We tried to sleep that night but we didn't sleep much. The next day was suppose to be my PET scan at 8:00 am. Well I was having so many seizures that they decided at 11:30 that they couldn't do the scan. Did I mention I couldn't eat during this time and it was all for nothing. They let me eat and they said we would try the test the following day but not until 1. So the plan was to wake me up early, keep me awake, give me ativan, and let me sleep for two hours then do the PET. Well they woke me up way to early that morning, and I gave my mommy fits all day. I was tired and hungry and couldn't do either so I was just mad. They finally let me go to sleep. I slept about 30 minutes and they gave me the ativan. And would you know 30 minutes later I was wide awake having seizure after seizure after seizure. They decided to go ahead and do the PET. They would just have to read the results differently. Now the results part. The on call doctor told us some horrible things that I'm not even going to share because they were untrue. All it did was make my mommy cry. When my neurologist came in and explained things mommy felt much better. He said that my EEG didn't look much different than October. It actually looked a little better because in October I was having over 200 a day. This time I was having about 100 a day. He said the seizures are coming from the left side. They still can not identify a focal spot but they are left sided. I did have 3 from the right side in a 48 hour time. Not the news we wanted but that's very few considering the time frame. They are not sure exactly what type of seizure I'm having. According to the EEG it looks like tonic but tonic seizures usually last longer than my 1 second seizures. They are saying its probably more like myoclonic jerks because they are so short. Either way it doesn't matter. I'm having way to many seizure a day. The PET scan did not show anything abnormal. We pretty much expected this because we couldn't get the test run like we wanted. So what now. We are going to repeat the MRI and 48 hour EEG again next summer. In the meantime we are being referred to a neurologist in Detroit. The neurologist in Boston said that this doctor is the best for children like Jadon. He said that he can do a different kind of PET scan on Jadon that Boston can not do. He said that if anybody can help him it would be this doctor. My mommy already knew about this doctor when he said his name so we knew right away we wanted to go. So we will be traveling to Detroit sometime soon. Everything about me is so rare and different. We are praying that this doctor will be able to help me. Overall the doctors in Boston were impressed with how well I had developed since they saw me last. According to my EEG and the frequency of my seizures I really should not be doing as well as I am. So God is definitely answering our prayers.