We started off the month by going to Busch Gardens and they had a Mardi Gras Celebration. We watched a parade and then they stated throwing beads. As Poppy caught them, I put them on. And when it was all over he tried to take one off. I was not having it. He needed to get his own.
Medically it was a very long month. My neurologist wanted to try a new medication during my last appointment. Poppy did some research before and it was about a 50/50 chance it would be effective so we gave it a try. Well it was not only not effective, but it actually made me worse for a few days. It was like a 4/5 years ago were my dystonia would be so active that I could not stop even when I tried to sleep. One night I fell asleep on the couch and poppy slept next to me on the floor. I was so glad that I had finally was able to sleep. I unfortunately had more seizures this month than I had in the last 6 months combined. The good new is Poppy stopped the medication when he seen it was not helping.
I went through a detoxing period for a week and that was no fun. I just could not sleep, my body would just not let me rest. And when I wanted to try and sleep on the couch (my favorite place to sleep) poppy made me stay in bed. He did not realize I could climb out and so I did. The third time I climbed out of bed he closed the bedroom door. So I pull his covers off of him and well when that did not work, I let him know AND I was not quiet.
Lets get to the good stuff. My school has its prom in February and this really cute guy Mikey asked me. I got my first promposal. After he gave me the sign he wanted it back because he likes Mickey Mouse. I was not going to have that, so after a quick tug of war I got to keep the sign. We both dressed in peach and went to a dance together. We had so much fun. Mikey is a really cool guy and I am glad we are in the same class.
Seizure Awareness
How many of you have been in a hospital and they put a probe on there finger and a machine tells your heart rate and oxygen levels. Well this is a pulse oximeter and I have two just like they use in the hospital. We use it mostly at night when I am sleeping. I hate the thing personally but poppy puts so much tape on my finger I cannot get it off. Why would I sleep with a pulse/Ox on for seizures is your questions? Well if I go into a seizure at night when Poppy is a sleep my heart rate will go really fast and the sound wakes him up. Or if a non-convulsive seizure and I stop breathing it will wake him up also. So yes I hate it but I sleep through the alarm either way. We just call it my night light. I cannot tell you how many of my other Dravet Warriors have earned the wings during the night and their parents wake up never getting a chance to say good bye. Danny was a little boy who did not have Dravet Syndrome but dannydid earn his wings at night due to SUDEP. Please support dannydid organization as they grants and education about seizures. Please use our link. Our family gets credit towards our goal of $1800.00 this year.
abigaile.org 
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