Abigaile uses a communication device; that when activated with her hands or eyes it speaks for her. Yet she still loves meeting people in person and trying to communicate verbally. With Dravet Syndrome someone is always required to be around her; who knows her and is medically trained. Her aids and I know her and understand her verbally since she can say a few words but they are limited.
In the movie Marvel Guardian of the Galaxy there is a character named Groot. In English when he speaks, we only hear three words “I Am Groot”. Yet he says so much more. He tells us when he is happy, mad or sad all by the same three words. He can devise a whole plan to save the Galaxy but we only hear “I am Groot” because we do not speak Groot.
Just like Groot, Abigalle is speaking in her own language with a limited English vocabulary. When most people meet Abigaile they do not understand when she say “HI” it means more than a simple greeting.
“HI“ has several meaning:
Greeting “hi”
I want something
I am happy
Yes
“Bye” is much the same:
Bye
Pain
I want to go
No
I do not want to go home (It starts half a mile from the house)
I am angry at you.
If you ever meet Abigaile in person listen very carefully, because you will not hear “I am Groot” but you will hear so much more.
I want to start my post off by saying Happy Birthday Momma. I love you.
I know all our parents teach all to share, but somethings are not meant to be share. Who likes the flu, you must be delulu. It started with a couple of my friends at school. Then I brought it home to Poppy. We really did not do much the first week or so of the month besides try and get better.
It fnallly started to change on Friday February 9th to Tim Tebow Night to Shine Prom. It was awesome. I was with the cutest guy. We so much fun. We went for a limo ride, danced and finished with…. Micky and I being crowned King & Queen of the night. It was special.
This month Poppy ordered annual passes for Disney; he is doing his big one. He wasted no time and we went to Magic Kingdom twice. The second time Boppy met up with us. Now if you did not know, Boppy is a cast member at Hollywood Studios. During our ride on “It’s a Small World” she fell asleep. How could you fall asleep to such a cool song. She said it a lullaby to cast member. Later that night we rode this new ride called “Tron” it was my favorite and I cannot wait to ride it again.
Every once in a while, a Princess has to spend time with her peers. We ate lunch Akershus Royal Banquet Hall in Norway in Epcot. Poppy said it was like eating at IKEA. That’s fly to me as Ikea is my favorite store.
Sleeping Beauty needs to go back to bed. I have seen Mermaids swiming (see January 2024) and Ariel is not that special. Now if you are talking Bell, she was dressed just like us southern bells like to dress and be ready for the ball. Cinderella let me tough her beautiful gloves and we very polite. If you ask me Snow White was absolutely beautiful, (she reminds me of Boppy). I just wanted to hug her. Poppy pulled my are back when I tried. I would like to meet her again. Hey poppy, I turn 21 on September 7th. Hint Hint
If you did not know, Dravet Warrior have issues with walking because of our gait is altered by this disease. While I use to walk all the time from 2012-2014 and still Poppy makes me go to therapy. I cannot do it all the time for two reasons. I have dystonia in my legs. Some people say it is like Parkinsons Disease. My feet will turn inward and shake sometimes so hard they bounce my whole body. So I spend a lot of time in my wheelchair. Its ok with me because you should see Poppy chase me when I go after the boys. Another issue I have is Scoliosis. I had this for years but we did not start to watch it until 2017. One doctor has suggested I get an elective surgery, but the rest of my medical team is against it at this point. Poppy is ordering me a special seat that will be molded just for me. It will help me sit up very straight, but it will not cure me. We will see how it goes.
March is spring break so let’s see what poppy has planned then. Till then I have some boys to catch & kiss.
I know I complain about doing physical therapy intensive and that is not the only therapy I do. Poppy takes me to Speech, Occupational and Physical Therapy every week. He comes and gets me from school which means I have to leave Mikey and all my friends. Get this once we get to therapy, he sits down while I do all the work. What gives, I am THE Princess and should not have to work. That what you other people are for. Anyways, I like MS Carli at PT, she is usually nice to me until I don’t want to work she can be mean and make me stand in a corner. Poppy is changed my therapy so I only work with her because I do like working for MS Carli but he said I still have to go to intensives every other month.
Natascha took us to Animal Kingdom this month. It was kind of cool at first and I just did not understand why we went on the safari ride with no window in the cool morning. This is Florida, we should not be cold.
Poppy also took me to see the Mantee’s in Homosassa State Park. It was cold that day I tried wrapping up. It was cool to see all the people standing in the cold watching animals just lay in the water. Later that week we went to Weeki Wachee Springs State Park and watched the Mermaids. They are so funning. People with no legs swimming. The boats were down so we did not get to go for a boat ride. I hope the are fixed soon, because I really liked them.
Lucky by the end of the month winter was over and we went to the beach. I really like my beach chair; we also use it as my running chair. Since Poppy hurt his knee, we have not gone running so it was nice to shake off the dust.
I am a Dravet Warrior and I know I am going to have seizures, but last year I only had 24 and It was almost weird going with so little. In 2017 I had over 200 seizure so Poppy is really happy.
What a month, Poppy did not let me rest. I cannot tell you how many places we went. First, we started the month with a few more days of physical therapy intensive in Kissimmee FL. I know this is suppose to be for my good, but who likes doing things that are good for them at 20. I was really glad when that week was over with.
December means Christmas and parties. And that is exactly what I did. Two school nights we went out when I did not have therapy. That was some much fun. We went to a living Nativity. They had the place looking like a Jerusalem with shops and camels walking around. It was wild. Before we left, we seen baby Jesus.
We also we and seen Santa at Ft Cooper State Park. They have the trails lined with lights and decorated trees. Poppy brought me a snack and we drank hot cocoa. We finished the day with a picture with Santa Clause. He said I am getting to old, he better not bring me coal.
Not including the Christmas Party at school, we went to Aunt Sherri for Christmas. I wore a special Christmas Dress Boppy found for me at Walt Disney. I look just like Bell. It is some much fun being with family. We eat, sit by the pool and lots of people came over. Uncle Jimmys brother Randy came from Hawaii, like why? I did not want to leave but Poppy said we had to leave.
It was a rough month with seizures. I had four seizures and of course my last one for 2023 was on New Years Eve. Poppy said this was normal for me, but who says seizures are normal. Only with a Dravet Warrior like me.
About time poppy made up for all the sitting around we did in October. He finally kept me busy for a few days. Since it is cooler, we are going outside more. Florida heat stinks as it can cause seizures when I get overheated.
We started the November with Kiwana’s Field Day; it is a really cool time where we have races and special games. all outside. Ms Marge pushed me and we placed second. MS Marge did good but poppy would have got first if he was not hurt. I guess I will have to settle. Just another medal to add to my growing collection.
We went to Busch Gardens twice this month and Sea World. We got to meet Rudolph the Red Nose Reindeer and his girlfriend Clarece. But what was really cool was meeting Bumble, The Abdominal Snowman. The cool thing about Bumble is he bounces and we had the coolest time seeing who could bounce the longest. It was so much fun. Poppy also stayed late so we could watch fireworks. They are really pretty, just not a pretty as me.
Natascha even went with us to Sea World one time. We went fishing and they gave me a stuffed animal. It is always fun being with Boppy, I do miss her and our snuggle time. We slept in the same bedroom until I was 14. Every once in a while, Boppy comes home and spends the night and Poppy lets me sleep on a air mattress with her. We end up staying up late watching movies and snuggling.
Now spending a day with Natascha was cool but what was really cool was petting a dolphin. At first I was not sure who was more scared, me or the baby dolphin. Finally the called the mommy dolphin over and she let me pet her. I was scarry but she was really nice. Poppy said we can do it again another time.
I planned on spending my Thanksgiving break relaxing, sleeping in and playing at the parks. Poppy thought different. I spent 4 days at a therapy intensive. I was really strong and walked 25 laps. This was the most walking I have done since we lived in California. Poppy was very proud and I was very tired.
Well Poppy finally gets it, he was training for Chicago Marathon but he got hurt. I had to watch him hobble and use my crutches for a while and he dropped out. He now understands that sometimes I just hurt to walk. Hopefully he will get better soon. Since he dropped out of the race, we did not do much this month but we did go one time to Sea World. It is always fun to see the dolphins. They are so playful.
One really cool thing that happen was I got to go see my boyfriend Mikey one day and not at school. (He is so cute). He invited me to see his uncle and we met in Mickey’s room. We joked around before we watched his uncle give a speech. It was really boring, I would rather just chill and listen to music. I had to go home before his uncle came back to the green room because it was getting to late and poppy said I had to go. Also, I don’t understand why they called it a green room when it was just a normal room.
Poppy is not feeling the best so we are going to keep it short.
August means back to school. I know my kids don’t like it, but I love it. Poppy always sends me of the first day with a new sign. He gets a laugh, I think he is a dork, but that is another story. I am in the same classroom as last year and when it gets too loud, I like to go outside and enjoy some sun. Oh, and look at the boys.
One thing about living in Florida, is we have beaches but sometimes it is not easy to get around. Poppy found this cool place who gave me a set of wheels that fit my running wheelchair. It is so cool going on the same. We even can get right up to the water and watch the sun set.
Now September is the time for the greatest celebration of the year….my birthday. This year is no different, my big sister boppy is a cast member (works at) Disney World. We went to Epcot Center and I met my favorite movie star in the whole world Mary Poppy. That lady knows how to have fun. I was actually speechless and did not know what to say next. Now we also met Cinderella these two very cool sister Anastasia and Drusilla. They were so much fun. I don’t know why people call them evil.
Now in my house we have a birthday week and it ends 7 days later on Boppy (Natascha) birthday. She also took me on her birthday to Magic Kingdom. While we met a few other cool people like Capt Jack Sparrow, Peter Pan and Airele. There is no one as cool as Natascha for taking me with. And guess what poppy made a sign for her to about how she only thinks she an adult at 25. Magic Kingdom is my favorite because we get to ride cool rides like “It’s a Small World”.
Every few years I have to do a special test called EEG. The put these fancy looking wires on my head and see how much seizure activity I am having. Since I have Dravet Syndrome, I always have something going on in the background of my brain. We also did a week of intensive in Celebration Therapy. While I know it does me well, who said I had to like it.
Break out the wet noodle and start whipping poppy. He has not updated my blog for two months and someone needs to whip him into shape. That being said we are going to combine June and July Blog. It has been a very busy summer. So get out the reading glasses all you older folks. Can’t say OK Boomer as poppy is a Gen X.
The first Monday after I got out of school poppy said we were going to Orlando. I am thinking Natascha, Disney or Sea World. NO, he took me to therapy for two weeks of intensive physical therapy and each week consist of 4 days of 3 hours of non-stop therapy. I fooled him and got sick so I did not complete the last few days. Poppy did not play nice and I had to do make up sessions in July. The really cool part was I was able to walk almost 200’ just holding hands. The therapist are Przemek and Silvia are a husband-and-wife team from Poland. I really like Silvia; she says when I get a break and does massage on my legs after I do a lot of walking. Przemek can be mean he makes me work and walk. Poppy says they are playing good/bad cop. I don’t get it but we will be returning in September for more therapy. Oh, by the way, I still go therapy 3 to 4 other days a week at home, so I do not just do intensives. Poppy says I can manipulate most of my therapist, but it does not work on Przemek. Hum, I think I need up my cute game.
After therapy in June, I went back to summer school with my friends for four weeks. I had so much fun. If you did not know I really like this guy Mikey in my class and I got caught giving him a kiss. Do not tell Poppy. I am also a fur aunt again. Just before the end of the school year Poppy and MS Marge found a kitten at my school. Well, Boppy (Natascha) adopted the kitten. When she came to pick him up she came up to my school and let me hold him. Oh, he is so cute I did not want to let him go. Boppy also has a hamster named Sparrow. So I am aunt to Captain Jack Sparrow.
Can we say we had an awesome month for equipment in July. First poppy got my tri-cycle out of storage and fixed it up. We went for my first bike ride in a long time. He took me on the Withlacoochee Trail, which is where we run every weekend. It was so fun riding a bike like everyone else. Unfortunately, it was a very hot July, so we only went a few times. When it gets cooler out, I will make sure I am heard LOUD (and I mean LOUD) and clear to go ride my bike. Most kitchen tables are not made for wheelchairs. I had one in the past that Poppy and Mommy made for me, but it was to big for our current home. So poppy made me a new one. I really like it. I can sit in my wheelchair or a regular chair. The legs are adjustable and there is no bar under the table hitting my feet. Also when I am sitting at it I can spy on poppy to see what he is cooking in the kitchen. I do not do snow; I like white sandy beaches. Here is the problem, wheelchairs do not go on sand and I can only go so far in a wagon. Poppy did some research and found Jjstoysforfriends.org. The provided custom wheels for my running stroller. I was able to go all the way on the beach and Poppy pushed me for over an hour the first night. It was awesome. It does not stop there, JJsToysforFriends also provided an attachment for my running stroller to be a chariot on Poppy’s bike. It is way too hot, but I cannot wait to go really fast. Poppy said next year he is going to complete a Sprint Triathlon with me. If all goes well, he will swim and pull me in a boat .25 miles, bike for 10 miles and run 3.1 miles. I am really hoping we can, it would be so much fun. Keep an eye out in 2024.
While it has been very hot, we did a few days at the parks in Orlando. We went to Disney Magic Kingdom and Hollywood Studios,. We even celebrated my grandma 80th birthday at one of the Animal Kingdom resorts. Thank you Boppy. We also went to Sea World and Busch Gardens. I had a lot of fun. The last time we went to Busch Gardens I started getting to hot and we left earlier than I would have liked, but I did not have a seizure, which is all that matters. We also went to Crystal River Archaeological Park. It is really cool. It has burial mounds, giant mounds that were stages and all kinds of artifacts. Part of the park was a museum so we stayed inside to keep cool for part of our tour.
I have been very stable the last few months with seizures. In June I went a full year without having to use emergency seizure medication. This was the first time I went in my life a whole year without a seizure lasting more than 5 minutes. Yes, I had seizures, but I was able to pull out of them on my own usually in 1 to2 minutes. The doctors say after 5 minutes a seizure can damage a brain. So we do not want that to happen.
SEIZURE PREVENTION:
What is a girl to do without accessories so I have lots of Micky ears and sunglasses. Some things you can just never have enough. Have you ever gone to a theater and they have a warning about flashing lights. There is a reason. Flashing lights trigger seizures for some people with epilepsy. For most kids with Dravet Syndrome just going into the sun can trigger seizures. To prevent seizures from starting, I wear sunglasses all the time outside to dim the sun. Sometimes when the sun is rising or setting when we are driving the sun will flicker through tree line. I have curtains in the back of my van to block this out. My school bus also has a shade specially installed to block out the sun. In the past some of seizures were really bad and a lot of them required emergency medication to stop them.
If you read this far, please give on our link for Chicago Marathon. All funds go to Danny Did Foundation. They help kids with epilepsy and we first heard about them with Dravet Foundation. Even if you give a dollar it makes a difference.
Poppy wants to thank 15Olives.com for there donation. They are awsome people and we really like there organic olive oil.
Ok, Poppy is really behind, it is almost June he is just now writing May update. I will say we did do two other updates. So this will just be a summary of last few weeks of May. You can read Extra Extra Read All About It . I want to thank a few special people who gave during this time to our fund raising. We still have a long way to go, so any donation is a big help.
First off, I am really mad at Poppy. Like WHAT THE DUCK mad. Have you ever heard of injured reserve. I had never heard of it until the last week of May. Apparently Poppy hurt his shoulder and he could not lift his arm for last few weeks of May, so he would not push me while running. What gives, he gets hurt and I have to sit out.
I finished off another school year at Crest, I really did not want the last bus to come. I really like school. I am learning how to make shirts with printing. You can see a picture of me and MS Kim making a really cool one for Abigaile.org. There will be more on this in the future, but I have a lot of fun at school. On one of the last days of school we had a mini pool party. I was watching Sean soak in the water and I wanted in. What MS Marge did did not tell me was the water was cold. When MS Marge put me in cold water and I wanted out immediately. That was not nice.
My favorite sister also stopped by one day to share her fur baby Capitan. Since I am an aunt, I hope to cat sit. He is almost a year old. I wish Boppe could spend more time with me, but she thinks going for her second college degree is more important. Oh by the way, I am very proud of Bopee, she is really smart. I think smarter that Poppy, and is way better at grammar. Maybe I should have her write my blog.
Since we all know I am a show off. Below is a picture of my wall of ears. I told poppy I do not have enough and we need to get a few more pair. He does not agree. Will see who wins, I know how to wrap him around my pinky at the right time.
To finish off the last week of May poppy made me do therapy in Orlando. This stuff is really hard and I did not want to work so I got a cold and had to sit out a few days. Poppy said I had to make it up in July. Yuck Since Poppy waited so long to write this, he better get started on June and make up for May.
OK, Do you know how cool I am, I had two articles about me published in last 24 hours. The first one was front page in our local paper. Here is a link to the Article but check out the picture, we owned the front page.
Now if you think that is cool, how about being in Runner’s World. Yeah that’s right, I am in The Runner’s World Magazine. Here is the article. And by the way, Poppy I am no happy with the picture.
If you would not mind giving up a coffee, please give to the link above for 2023 Chicago Marathon. Dannydid.org is an great organization and they help a lot of families, including mine.
abigaile.org 
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