Wow did we have fun today. My school had a fall dance and did we dance. I love dancing in my chair and with all the fun people in my school. The day before was halloween and Woody from Toy Story stopped by. I think he has gained some weight. We had so much fun that I not only took a nap on the bus but went to bed early.

Today was Halloween and we to to fall festival at Floral City Park. Natascha and I both dressed up as pirates . I had a pumpkin painted on my face. They had lots of games to play. My favorite was a game poppy called Bozo’s Grand Prize Game. I made four buckets all by myself and I picked out four pieces of candy. I let Natascha hold my bucket for a while and my candy just disappeared. Hum I wonder where the candy went. After the party we went to Dairy Queen for dessert. When I got home I was tired and could not wait to go to sleep.

Yesterday, I wanted to go out but my legs were bothering me and I did not want to have a seizure so we stayed home vs going to church. I really missed going and cannot wait until next Sunday.

This week is red ribbon week for drug awareness. Today, I went to school and we had crazy hat day. So I wore two hats because you have to work at being crazy. Tomorrow is sport days, I will wear one of my Tampa Tarpons shirts. There my favorite baseball team. We went to several of their games and we even went on the field two years ago and watched the fireworks.

Last night I receive a call from my momma, she does worry about me when I am quiet, but I am just listening on the phone to her read to me. Today when I woke up poppy got me ready for the day and then he left me at home so he could go to his men’s bible study. I did not stop saying bye because I wanted to go, but I understand. While he was gone I stayed home and played with all my toys, sometimes it is just fun getting on the floor. Poppy said we would go out tomorrow. Below is a picture of when I was mad at poppy because he was cooking when I want him to play.

I normally go to ST and OT before school but today we had a Homecoming parade at school so I had to arrive earlier than normal. I felt like homecoming queen with my two wands. It was a beautiful morning the the 70s and I got plenty of sun. After the parade we went back into class and I did some drawing all by myself. What a fun day. I was so tired I fell asleep at 19:30 and slept through the night.

I had a full day, we started by going to occupational (OT) and speech therapy (ST). I was a little shaky with my dystonia at ST but we made it through. Then I went to ST, wow I had a great day. We are working on associating pictures with words. I got 90% correct on the first time and the second set was 80% correct. Everyone was so proud of me. .

Then we went to Orlando to see Dr. Jerry, boy is this a full day. When we arrived at Dr Jerry I was so excited that I started yelling. When poppy said if I did not use my indoor voice I would have to wait outside, I told him”I GO IN”. Guess what I went in. I have gained so much weight, I am up to 80 lbs. Dr Jerry was able to observe me when my dystonia was bad just sitting , first time, but at least he finally understand how bad it can be.

I finished my day off by talking with my momma. She read several stories to me.

Welcome to my new blog Abigaile.org …..Princess and Dravet Warrior

I was born normal and healthy however when I was 5 month old I had a reactions to to my DTaP vaccine. While I have numerous related medical problems I am a warrior and will continue to fight. The two medical terms you will read most are Dravet Syndrome and Dystonia. Dravet is a clinical diagnosis, aka just describes the symptoms unlike sickle cell anemia, you can find out more about it at https://www.dravetfoundation.org/ . Dystonia is a from of tremor in which both muscle groups contract at the same time. I does not stop even if I am in pain. Neither Dravet or Dystonia have a cure. This blog is a way to share my day with people who love me.

PS Don’t be the grammar police, My poppy types this out and he is horrible at writing.