I do not know if I know how to handle not going to one amusement part for a whole month. We life in Central Florida. Really poppy better make up for it next month. So here is the round up from what was interesting for April.

Poppy did make up for not going to the amusement parks by taking me on 3 long runs, including a race.at my school. See April 15,2023 post about “Doing the Hustle”. It was a lot of fun yelling at poppy to run faster up the hills during our 10K. The hills were not that big to me, but he kept slowing down and walking. We did our fastest race at 1:06:20. Now here is the cool part about the race. This guy Matthew Beck works at our local paper the Citrus County Chronicle took my picture at high school graduation ,was at the race Well Matthew Beck remembered me and he took our picture again for the news paper. It must be because I am so pretty or he just has never met a real princess. We poppy asked for a copy of the picture and gave him our card for Abigaile.org. Well we met with him again and he took my pictures a third time. This time he did it when Poppy and I went for a walk. Let see what happens.

So Poppy is running thing called a marathon this fall. I do not get what the big deal is, he runs all the time. Anyways, in my transition class MS Kim and I made some cool looking shirts for Poppy and I to wear when we run on the weekends. Get this they say Abigaile.org on them.(You can see them in the pictures below). It was a lot of fun. MS Kim and Moppy (MS Marge) let me do special projects with them. I get bored sometimes, so I go flirt with Mikey this cute guy in my class. Ops I need to watch what I am saying. Poppy thinks I am learning life skills.

Poppy picks me a couple times a week and takes me to therapy. One Monday, Poppy seen this little kitten walking by some weeds. Poppy yelled at MS Marge because she is a cat lady.(Haha got a good one in there). MS Marge took him to a vet and he was only 3 weeks old and had an eye infection. Ms Marge named the kitten Jack. He was not old enough to be on his own and needs some medical care. If Jack gets better I know someone looking for a kitten. Boppy (Natascha) is looking for a second kitten to keep her cat Captain company. If Boppy can adopt Jack she will have two kittens, Captian & Jack. I wonder if she will get a third cat and name her Sparrow?

This month my 35 days without a seizure ended. It is so nice going so long without my body going crazy. I know I have small seizures all the time, but the big ones really take it out of me and all I want to do is sleep at first. Well actually I get mad when I come out of them and scream then I take a nap. We also had two doctor appointments. The first one we took pictures of my heart to make sure I am healthy. Yep, I am good to go for another 6 months. That afternoon Poppy took me to my neurologist. She kept my medication the same but we are going to change my diet again. I am on the Keto-genic diet, a lot of people have tried the non-medical version but it is not really close to what I am on.

Seizure Awareness

The Ketogenic diet I am on has helped with my drop (myoclonic) seizures. These are small seizures that do not really hurt, but I just fall over without notice. I use to wear a helmet when I was little so I did not hurt my head. The drop seizures were a lot worse, but once I started the keto diet they pretty much stopped unless something else is wrong. I started the classis keto-genic diet to control some of my seizures. On classis diet, it is monitored by a dietician and Poppy has to weigh every food I eat on a scale to 0.01 a gram. When I started I was on the classic diet for 4:1 ratio. What does this mean? For every 4 grams of fat, I was allowed (.7) grams protein and (.3) grams of carbs. So essentially carbs were out of my diet for 4 years. When I started this diet, Poppy and I stayed at the hospital for a week to make sure nothing serious happen. I was cool with it, new people to see and say hi to. My doctor appointment this month we decided I could go to 2:1 ratio. Which means more food less oil. To give you a comparison, most people doing keto diet for weight loss are 1.2:1 ratio. They seriously get to eat solid food. When I first started the keto diet I will never forget when MS Kay took a bit of my (4:1)food in High school by accident. She made the funniest face. Poppy learned a lot about keto-diet for seizure control at Charlie Foundation. He also learned how to make a lot better tasting food. Don’t get me wrong Poppy can cook, but it was rough when I first started Keto. If you want to see how not all cheese omelets are not the same. See the picture below, Can you guess which one is a 4:1 VS 2:1 ratio? Yes, that is straight olive oil. Ready to do shots with me?( Olive oil not alcohol, I am only 19 you know.)

Keep an eye out for special post this next week. A lot is happening at Abigaile.org. Also leave a comment and let me know what you think of the new web page. I made Poppy change it to purple my favorite color. Which also is the color of epilepsy awareness.

I wanted to update everyone with a really cool thing that happen this weekend. Poppi and I ran a 10k with the funds going to help our local schools called School House Hustle. When we registered Poppi wanted to run 5K but I called him a wimp and we registered and ran full 10K in 1:06:20. Guess what I won my division again. Poppy placed 5th out of 5 in his division. I do not know why he is so slow. I always cross the finish line before him. Here is the next really cool thing, we were in the local new paper check it out. I will post more later this month but I wanted to do a quick update.

Credit MATTHEW BECK Citrus County Chronical

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.

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.

     We started off the year running and we are not looking back. Poppy ran behind me for my first official race.  I not only finish the race before poppy, but placed 1^St for my age division, because who else would win a race but the princess. (Check out the trophy). I was rocking it while poppy was pushing it. I cannot wait to run the next race. Poppy said he would see what he can do but he has some training to do. I think he is getting old but he doesn’t know it.

     So here the deal for 2023, the blog is about my life so let’s get real. Each month I am going to cover not only the fun stuff but some of the real parts of my day that not so much fun. This is all going to tie into my poppy crazy adventure for 2023. He decided to run a very long distance of 26.2 miles. He calls it a Chicago Marathon. What ever that means. I asked if he would push me like he did the last race. He said maybe in the future he would but this is his first marathon, so he needs to do it solo.

      So here is the reality for most Dravet Warriors. Little is known about our life expectancy but to many warriors lose their battle having a seizure in their sleep. When someone dies from a seizure it is call SUDEP (Sudden Unexpected Death in Epilepsy). Very little is known about SUDEP but some organizations help make awareness known and help families in need. One organization that poppy has learned a lot from is called Dannydid.org . That is why poppy is raising $1800 for dannydid.org and when he does, he can run his crazy thing called a marathon. So please give.

     And before I forget, I just went another 32 days seizure free. While I do not always go that long it is nice when it happens. My neurologist and she has me trying a new medication. The new medication works on the GABA protein and if it works, I will get off a medication that both my doctors and poppy do not like. Problem is it is the medication that helps the most.

Poppy took said he was going take me to see my Boppy (Natascha) he just did not tell me it was going to be at therapy. I did see Natascha but I spent another week at therapy in Kissimmee and that is real work. I know poppy is very proud of me but the only thing I want to do after is sleep. I had a good week with my dystonia and walked over 500’ on Wednesday so I was not really excited about going back Thursday. On Thursday poppy took me to Sea World with Boppy (Natascha) for a few hours after therapy and we road roller coasters. I even went to Sesame Street and I go these cool Abby ears. I had poppy pick up Elmo ears for my buddy Mikey. Mikey was so excited when I gave them to him, I wish you could have seen him smile.

Merry Christmas and Happy News Year. Wow what a month was December, so here is the low down. I have not had so much fun in a long time. First off my school rocks. we had a party where they had a rocking DJ. I did not want to leave. They even gave us Christmas gift. I go a Minnie Mouse and my favorite buddy Mike got Mickey Mouse. We are the same age and have so much fun in class that we did not want to let go of each other before each others hand. If you want to know the truth, I am really looking forward to going back to school in January so I can see Mike.

So on to the good part, this month Natascha took us back to Disney Magic Kingdom. Man was is it fun there. Once again we went on as many rides as possible before we had to go home. What really stunk is I had to go back to school and therapy the next day.

Poppy made up for it the next weekend. He took me to Busch Gardens in Tampa. There are some really cool animals there, but not as many rides for me. I cannot ride the tall people roller coasters. We still had fun. If you look at one of the pictures there is a kitty in the back that I wanted to take home Poppy said I could not take the chetah home 😦 . I also got to meet Elmo and meet some friends from Sesame Street.

For Christmas I went to some to see some family in Ft Myers. My momma sent me some awesome gifts from my momma. You can see a picture of me sitting next to them. I like snuggling next to the white wolf when I am going to sleep. She always reminds me I am her sunshine. Poppy thought is was good exercise for me to open them by myself no matter how long it took. Yeah buddy was he wrong. I tore through that wrapping paper in no time. It did not snow but it was very cold and I did not want to go outside all day. I do not understand why anyone like the cold.

On New Years Eve went to Sea World and wow is that place cool. We seen so many animals that live under water. If you ask me the people walking around the animals are a lot more amusing. I am sharing a few pictures but we watched a Killer Whale jumping, Otters causing mischief, people petting rays and we even seen hammer head shark. I did not want to leave but poppy said we had to leave after the first set of fireworks. They had 3 set of fireworks with the final set at mid night.

Medically I finally lowered my keto levels from a 4:1 ration to a 3:1 ratio. Which means I get more food and less oil. Poppy has to weigh out my food and for every 3 gram of oil, I get .3 gams of carbohydrates and .7 grams of protein. I have been on this diet for 4 years and this is my first change.

As 2022 came to an end I hope you were as blessed as I was this year. I am looking forward towards 2023.

In case you did not know I cannot speak a lot of words in English as you know it. If fact I speak Abigailise, A few people know how to listen but not enough. My poppy interprets what I am say and let you know. He also censors when I get mad. He says some four-letter words that he will not let me say. While I would like to speak or write my body does not always co-operate. I have tried using an iPad but when my hands do not work because of my dystonia I am left speechless. That is coming to an end. This month I got my Tobi-Dyno Vox sight communication. I can look at the screen and move the cursor to a picture or word. The screen then speaks what I type. This is very tiring, so right now I am only using it a few minutes at a time. I hope to build up my eye strength over time and use it all the time.

For some reason Poppy keeps taking me to this really hard therapy in Orlando. I like the therapy were the therapist listen to me and play only games I like. Every time I get a therapist trained right; he changes them. He keeps telling me he will not change therapy in Orlando. Ugh will someone tell Poppy I hate hard work.

Poppy and I set up our Christmas tree the weekend before Thanksgiving. Well Poppy set it up and I move my chair around and ran over his toes. He kept saying that hurt. I never know setting up a Christmas tree hurt so much.

The last day of November Poppy said I did not have to go to school and therapy. I was like so what are we going to do. Well, I got to spend a who day with my favorite (and only sister) Natascha. She took us to Disney World Epcot Park. When we arrived, I said “HI Disney” and poppy /Natascha were so excited, they acted like I never speak words.  It was so much fun. I rode Chevy Slot cars twice, Ratatouille twice, Planet Earth Twice, and walked through all kinds of stores. I wanted to go on Guardians of the Galaxy, but Poppy said NO. That was no fun. It was my day.

My doctors did not like how some blood work looked, so we are changing some things on my diet. I don’t mind eating less oil. I just hope my head does not go screwy and have seizures. My dystonia was horrible this month and I would like a break.

Ps Would you all tell Poppy know, when I pull the covers over my head it means I want to go back to sleep and not go to school.

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.

Wow what a way to end a month. Since my last post we had an exciting time. Hurricane Ian hit Florida as a category 5 hurricane. It came real close to my aunt and uncle in Ft Myers but lucky they just lost power. We just had rain for three days and had to stay home the whole time. The exciting part of Hurricane Ian was Natascha spent two days with us and her boyfriend joined us. I am jealous she has a boyfriend. Who knows maybe someday I will get one myself. Until then I will keep chasing.

Unfortunately Poppy did not get to run the second of our planned races, a half-marathon in St. Petersburg but he will run it next year. He did run the Tougher Mudder Sprint, and guess what he was covered in, MUD.

I got to miss two days of school and therapy, but Poppy made up for the last day. The exciting part was I got to swing with MS Jenn. Ms Jenn was my first occupational therapist when I moved to Florida. She is always fun but I only get to work with her on special days.

Let the running begin. We did our first virtual race today. It was lots of fun telling everyone “HI”on the Withlachoochi Trail. We ran 10K (6.2 miles) in 1 hour 22 min pushing me (about 120 lbs with stroller). This was the longest poppy ever ran with me and it was a lot of fun. I cannot wait until the next time. Poppy is looking for a run were we can actually race with lots of people.

We are also celibrating me going 54 days seizure free. For people who do not already know. This is the longest I have actually gone without a seizure for over 15 years. It is really cool and Poppy said now that we have gone 30 days he is looking forward to 6 months seizure free. I started a new medication last year and groups like the Dravet Syndrome Foundation help with funding research for new medications. Please give if you can. Here is a link. I do not receive any funds, but I do go seizure free because of research in new medications. So please give.

Also Thank you MS Marge for making the shirts for running. Poppy let me wear one of them. Poppy is going to race two more races over the next two weekends. I wish I could go but the first one is a muddy obstacle course and he cannot carry me. The second one is a half marathon and he said he is not ready to run pushing me 13.1 miles yet. He did promise he will one day.