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.
abigaile.org 
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