My middle name should be the “Amusement Park Princess” because that is what we did almost all month. Poppy and I went to Sea World (twice), Disney World Magic Kingdom and Epcot and was it fun. The coolest part was I got to see Boppie (Natascha). While I try and act cool around her, I really do miss her. We shared the same bedroom until I was fifteen and sometimes I just miss her nutty personality. If you ever want to see her she works as a cast member at Roundup Rodeo, she gets to see Buzz Lightyear and Woody a few times a week when she is not at school. Thank you Boppie for taking me to Disney.
At school we had Parent Day, our class (transition) was set up as carnival with games for all the students at Crest. I dressed up as a mermaid with a fish tail. All the cute guys came in to our classroom.(don’t tell poppy its our secret). MS Marge was in the kissing booth. It was so funny. When someone rang the bell for a kiss she gave them a Hershey’s Kiss. Some of the boys went back for seconds and I was sitting next to her the whole time.
Poppy scheduled me for a week of intensive physical therapy this month. I really did not want to work hard so I got sick and had only two days of therapy. HA HA no therapy for me. Poppy has since said he will be taking me back in May. Darn It !!! I am doing a lot better than February for seizures. While I still had a few seizures my dystonia was much better and I am back to walking again.
Seizure Awareness
For kids with Dravet syndrome, we have what the doctor calls background noise or micro seizures. As much as the doctors would like to stop all my seizures, they really cannot. I am having small seizures even when I appear normal but the doctor said this is ok. I have a really big seizure (grand mal) about every 14-30 days and these last about 90 seconds to two minutes. I really hate these seizures but after the headache my body does a reset and I am good for a while. The longest time with out a big seizure was almost 90 days.
Every once in a while I have a super de duper of a seizure and go into “Status”. These seizures are they ones that make Poppy nervous are the ones that last over 5 minutes and I cannot come out of the seizure without medical intervention . After five minutes my body (brain) can suffer damage. When this happens Poppy gives me a form of vallum (Diastat) up my booty, I really hate it. Luckily FDA approved a new type of emergency medication (Valtoco) that he can give me up my nose. Either way it burns but it takes me out of my seizure. If these meds do not work, I get a trip to the hospital. Since I moved to Florida, this has happen twice. If it is really bad seizure i get a airflight to Orlando. Lucky I have not had to be airlifted. The problem with Diastat & Valtoco is they are addicting and can be very hard to get off these medications. I have not used the vallum since June 11 , 2022. I am hoping I can go a full year without a Diastat or Valtoco. this would be the longest time without a seizure this long in over 15 years.
abigaile.org 
You must be logged in to post a comment.