September 8th, 2013
We are on our way to San Jose for my 5th annual fiesta!!! I am so excited to be going to Texas to see family and friends!!! There are two new Lissencephaly mom’s that are flying to the benefit to meet me! I cant wait to meet Kathy and Kate in person! Of course the other mom’s that come each year will be great to see as well! My mom and dad got up super early to get prepared for our first leg of the trip!! I had woke up at 8am and had a seizure. My parents were not happy to see the seizure monster again as I had not had one for four days and it is so great when I can get a break from them! It was pretty strong and I went back to sleep. I woke up later at 11am and my parents plan was to leave the house at 12:30 for the 2pm ferry…. I had another seizure upon awakening the second time. It lasted for 30 minutes and as well wiped me out. Indio and Selva came up to me while I was having my seizure and licked my hand. After I was done mom rushed to bath me and her and dad finished loading up the car. The dogs were very sad to see us go.. They kept watching every move and with the saddest faces.
We pulled out right on time at 12:30 and I went back to sleep in my car seat and mom began to give me lunch. The ferry was super crowded but Miguel and Ronald at the ferry always are so kind to us and we get to skip the line and go straight on board. We always stay inside the car, it is too complicated to go up top where everyone sits. We are loaded down!! We have my medical box that weighs 50lbs, 3 suitcases, my oxygen machine, and of course all are carry on!! We cant wait to get to Dallas. Traveling is a bit hectic for us! The traffic into San Jose was crazy, Sunday is not the best day to drive to San Jose but we made it! After I woke up from my nap in car I had another seizure. 🙁
We made it to the hotel and I was ready to get out of the car. That is a long drive to be in a car seat. I was so happy to stretch out on the bed! We ha dinner and went to bed early. I had one more seizure though before finally falling into a deep sleep… Four today. Mom and dad are praying for no seizures on the plane. That always makes things stressful!!!
Love Malia