We started the month by running a virtual race for Dravet Syndrome Foundation. We raise just over $200 dollars. While it may be a lot to some people it all adds up. Poppy pushed me for 5K (3.1 miles) and it was so much fun . There is a picture of us and our time below. This is not even the most exciting news.
I went 70 DAYS SEIZURE FREE. While this may NOT seem a long time to most people, this is the longest I have gone without a seizure in over 15 years. MS Marge and MS Tara (Nurse) knew it was coming by how I was acting. So I had to go home on the school bus with my monitor on. If you look at my picture you will see a probe on my ear. This is a pulse ox. It measure my heart rate and oxygen levels. My heart rate will go up the closer I get to a seizure and than go really fast when it happens. The seizure happened at home and I went seizure free from July 26, 2022 to October 10, 2022. It did suck when I had the seizure even if it was only 90 seconds, but it was awesome being seizure free for so long. Poppy was pretty scare when I went that long, he was just not use to it. Let see if we can go longer and really scare him.
We finished off another week of intensive therapy in Kissimmee, Poppy has me going one week every two months. The therapist were really happy how I have maintained skills this month. I am working on standing independently with a walker. This my sound easy, but when I try and stand my dystonia moves my legs and it really can hurt sometimes.
abigaile.org 
You must be logged in to post a comment.