The Beginning

We arrived in Florida last weekend and enjoyed a few days with our family. The weekend before I was in three inches of snow, freezing. This time, it was in the 80's and we went to the beach. I think I prefer the weather here :)Don't get blinded from my un-naturally white skin. Haven't seen the sun for a while. It now resembles a paint horse. Red and white splotches. I guess that's what I get for self applying my sunscreen! It was sure great to see Cole laughing and smiling. He kept saying, "I am happy!" He even turned to me and said, "I glad you happy, Mama." I think that he could just tell that I was grateful to be there with him. He had not been to a beach since Sept 2009. A long time considering his parents love of the ocean. I had a few teary moments, just realizing once again that with a lot of work, he can have a good life too. I think I am just turning into a blubbering mess. I started to cry when we were coming through the airport and saw a Give Kids the World Village staff member waiting for their wish kid. I need my grandma to tell me to, "Stop your boobing Nik!"Cole did great on the plane, thanks to Diastat :) He also did wonderful at the beach and in grandpa's pool. He only had one major seizure the entire weekend, but it was less than 3 minutes. He is sure going through a good phase with GTCs since he has gotten fat back into his system. Apparently, getting off keto is not an option for us :)As usual, he is not being totally cooperative. He is right in his window for a long seizure, all hooked up to the EEG and just having lots of small ones. He has never had a generalized tonic clonic while hooked up to an EEG. It is always weird to hope that he has a really bad seizure.We are really liking Miami Childrens. It seems like we have been waiting so long to get here. It has taken a lot of time and money, but we already feel like there is a good plan for our future. We are grateful to not have to explain ourselves to every single medical professional that comes in the room. We are also continuing to be impressed with the Dravet clinic staff. They weren't just putting on a good show in Connecticut :) They started Cole on Depakote yesterday, we had already discussed this before we came. So far, he is doing okay. Just restless as usual.

Hospitalizations are so hard on him, especially if he is "healthy". Being tied to the wall for 5 days is going to be rough! He loves to wander, but has to stay either in the bed or on the chair so the camera can capture all of the seizures. The doctors have already told us to stop pushing the button for the myoclonics and absence seizures, they have PLENTY of data! So, I don't have to ride the button to mark anything over 15 seconds. It's not even that I am trigger happy, he really is having that many seizures. I'm interested to see how many more he is having compared to the EEG last year.