This is a pre-trip report for our June 22-28 trip to WDW.
Let me introduce my family.
Dad (Eric)
Me (Mary Anne)
DD #1 (Rachael-15)
DD#2 (Emily-11)
DD#3 (Sarah-10)
Wish Kid (Samuel--we call him Sam-8)
Sam was a very healthy child and developmentally on track until he was 4 1/2. That is when he had his first seizure. After many tests, we were sent home and told it would probably never happen again. Two days later he had another tonic clonic seizure. Within a week, he was having 60-80 myoclonic seizures a day and up to 12 tonic clonic seizures a day. Our life was turned upside down, to put it mildly. Sam has been on multiple anti seizure medications, steroids, ketogenic diet, all with no success. He has been diagnosed with Lennox Gastaut Syndrome. It has been devastating for our family. Our life has been dictated by whether or not Sam is seizing at the moment. We haven't planned anything since the seizures started. We live one minute at a time.
That is one reason we are so excited for this trip. It is something we can all look forward to. We used to live about 3 hours from Orlando, so we have done day trips to Disney, but it has always been spur of the moment, so we have never had a "game plan", which I think takes away from it a lot.
I look forward to sharing our story with you.
I have really enjoyed everyone's posts and I am so excited about all the things I have learned. It is going to be a magical vacation!
Let me introduce my family.
Dad (Eric)
Me (Mary Anne)
DD #1 (Rachael-15)
DD#2 (Emily-11)
DD#3 (Sarah-10)
Wish Kid (Samuel--we call him Sam-8)
Sam was a very healthy child and developmentally on track until he was 4 1/2. That is when he had his first seizure. After many tests, we were sent home and told it would probably never happen again. Two days later he had another tonic clonic seizure. Within a week, he was having 60-80 myoclonic seizures a day and up to 12 tonic clonic seizures a day. Our life was turned upside down, to put it mildly. Sam has been on multiple anti seizure medications, steroids, ketogenic diet, all with no success. He has been diagnosed with Lennox Gastaut Syndrome. It has been devastating for our family. Our life has been dictated by whether or not Sam is seizing at the moment. We haven't planned anything since the seizures started. We live one minute at a time.
That is one reason we are so excited for this trip. It is something we can all look forward to. We used to live about 3 hours from Orlando, so we have done day trips to Disney, but it has always been spur of the moment, so we have never had a "game plan", which I think takes away from it a lot.
I look forward to sharing our story with you.
I have really enjoyed everyone's posts and I am so excited about all the things I have learned. It is going to be a magical vacation!