bseizurefree hashtag performance

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Since the floors are “lifeproof” we are trying to make them stay that way 🤣🤣 @The Home Depot does warranty on flooring cover Tow Mater riding? #dravetsyndrome #fyp #house #ride #track #lifeproof #mater #warranty #homedepot #floor #bseizurefree #nottodaydravet #curedravet #💜 #🦋

Since the floors are “lifeproof” we are trying to make them stay that way 🤣🤣 @The Home Depot does warranty on flooring cover Tow Mater riding? #dravetsyndrome #fyp #house #ride #track #lifeproof #mater #warranty #homedepot #floor #bseizurefree #nottodaydravet #curedravet #💜 #🦋

The video that started it all for B on TT. So many people tagged @Fisher-Price @mattel. I even reached out to them myself with no response. I was bummed at first, but as special needs parents, we are use to adapting things ourselves anyways. Since then, my husband has improved the strength of Mater to accomodate B’s growing. We just are stuck with the small plastic body that we haven’t figured out how to upgrade yet. #dravetsyndrome #fyp #onthisday #viralvideo #fisherprice #makeawish #superhero #bseizurefree #curedravet #nottodaydravet #💜 #🦋

The video that started it all for B on TT. So many people tagged @Fisher-Price @mattel. I even reached out to them myself with no response. I was bummed at first, but as special needs parents, we are use to adapting things ourselves anyways. Since then, my husband has improved the strength of Mater to accomodate B’s growing. We just are stuck with the small plastic body that we haven’t figured out how to upgrade yet. #dravetsyndrome #fyp #onthisday #viralvideo #fisherprice #makeawish #superhero #bseizurefree #curedravet #nottodaydravet #💜 #🦋

Replying to @D a n making it into adulthood would be wonderful for B. He will defy the odds of Dravet Syndrome and we will adapt Mater if he still wants it. We take everyday we get as a blessing. Even if it looks odd to you. #dravetsyndrome #fyp #ride #life #mater #bseizurefree #curedravet #nottodaydravet #💜 #🦋

Replying to @D a n making it into adulthood would be wonderful for B. He will defy the odds of Dravet Syndrome and we will adapt Mater if he still wants it. We take everyday we get as a blessing. Even if it looks odd to you. #dravetsyndrome #fyp #ride #life #mater #bseizurefree #curedravet #nottodaydravet #💜 #🦋

For that minute of feeling bummed out, we wake up to a fresh start and a happy kiddo. Energy levels, mood, etc all back to base line after a night rest. F U Dravet. You aren’t going to mess with our B and his happiness. #dravetsyndrome #fyp #warrior #happy #seizure #bseizurefree #nottodaydravet #curedravet #💜 #🦋

For that minute of feeling bummed out, we wake up to a fresh start and a happy kiddo. Energy levels, mood, etc all back to base line after a night rest. F U Dravet. You aren’t going to mess with our B and his happiness. #dravetsyndrome #fyp #warrior #happy #seizure #bseizurefree #nottodaydravet #curedravet #💜 #🦋

why does the old floor seem like forever ago? So far, our “lifeproof” @The Home Depot floors have been holding up fairly well. #onthisday #dravetsyndrome #fyp #house #track #mater #bseizurefree #nottodaydravet #curedravet #💜 #🦋 #happy #comfort #specialneeds

why does the old floor seem like forever ago? So far, our “lifeproof” @The Home Depot floors have been holding up fairly well. #onthisday #dravetsyndrome #fyp #house #track #mater #bseizurefree #nottodaydravet #curedravet #💜 #🦋 #happy #comfort #specialneeds

B’s seizures have always been very pattern based. Sometimes to the exact day and time. His pattern the past month was Wednesdays around 4. Hoping we can finally break the pattern and continue to go a longer stretch. #dravetsyndrome #fyp #wednesday #time #day #pattern #seizure #epilepsy #bseizurefree #nottodaydravet #curedravet #💜 #🦋 #🙏

B’s seizures have always been very pattern based. Sometimes to the exact day and time. His pattern the past month was Wednesdays around 4. Hoping we can finally break the pattern and continue to go a longer stretch. #dravetsyndrome #fyp #wednesday #time #day #pattern #seizure #epilepsy #bseizurefree #nottodaydravet #curedravet #💜 #🦋 #🙏

Just another day with Dravet throwing in a seizure to end the night while getting a bath. Feeling like I jinxed it. 😔 #dravetsyndrome #fyp #warrior #fighter #seizure #bseizurefree #nottodaydravet #curedravet #💜 #🦋

Just another day with Dravet throwing in a seizure to end the night while getting a bath. Feeling like I jinxed it. 😔 #dravetsyndrome #fyp #warrior #fighter #seizure #bseizurefree #nottodaydravet #curedravet #💜 #🦋

Replying to @donroot3 B’s AAC device is an iPad through Tobii Dynavox. They had several different models to choose from. B was the most familiar with using the IPad so we stuck with that option to make it easier for him to learn. He gets a new model every 3 years. #dravetsyndrome #fyp #ipad #language #talk #speech #communication #nonverbal #aac #device #specialneeds #accomodation #bseizurefree #curedravet #nottodaydravet #💜 #🦋

Replying to @donroot3 B’s AAC device is an iPad through Tobii Dynavox. They had several different models to choose from. B was the most familiar with using the IPad so we stuck with that option to make it easier for him to learn. He gets a new model every 3 years. #dravetsyndrome #fyp #ipad #language #talk #speech #communication #nonverbal #aac #device #specialneeds #accomodation #bseizurefree #curedravet #nottodaydravet #💜 #🦋

Replying to @HnnhMarin B’s first two year were some of his worst seizures. The duration of his seizures were long and the hospital just couldn’t get them to stop without intubating him. Those seizures would take him a good week to recoup and eventually he would regain ability back. The relentless seizures however did take away his ability to speak. #dravetsyndrome #fyp #loss #warrior #seizure #nonverbal #medicallycomplex #speech #bseizurefree #nottodaydravet #curedravet #💜 #🦋

Replying to @HnnhMarin B’s first two year were some of his worst seizures. The duration of his seizures were long and the hospital just couldn’t get them to stop without intubating him. Those seizures would take him a good week to recoup and eventually he would regain ability back. The relentless seizures however did take away his ability to speak. #dravetsyndrome #fyp #loss #warrior #seizure #nonverbal #medicallycomplex #speech #bseizurefree #nottodaydravet #curedravet #💜 #🦋

We were doing so good with seizure duration. 😔 With each seizure a little bit more of me breaks each time. But I dust myself off, because I know tomorrow will be a better day because B is home and safe. #dravetsyndrome #fyp #winter #snow #hospital #warrior #fighter #seizure #bseizurefree #nottodaydravet #curedravet #💜 #🦋

We were doing so good with seizure duration. 😔 With each seizure a little bit more of me breaks each time. But I dust myself off, because I know tomorrow will be a better day because B is home and safe. #dravetsyndrome #fyp #winter #snow #hospital #warrior #fighter #seizure #bseizurefree #nottodaydravet #curedravet #💜 #🦋

Replying to @Kayla you are exactly right! Could you imagine taking someone’s blanket away all because they’re “too old” 🙄 we will grow Mater with B if that’s what he continues to want. #dravetsyndrome #fyp #parentsoftiktok #happy #comfort #specialneeds #accomodation #bseizurefree #curedravet #nottodaydravet #💜 #🦋

Replying to @Kayla you are exactly right! Could you imagine taking someone’s blanket away all because they’re “too old” 🙄 we will grow Mater with B if that’s what he continues to want. #dravetsyndrome #fyp #parentsoftiktok #happy #comfort #specialneeds #accomodation #bseizurefree #curedravet #nottodaydravet #💜 #🦋

Replying to @jays.rett.journey we have yet to do this for B because we can’t decide what he would love the best. His top 2 choices for sure would be pool or his ride on. #dravetsyndrome #fyp #makeawish #wish #bseizurefree #nottodaydravet #curedravet #💜 #🦋

Replying to @jays.rett.journey we have yet to do this for B because we can’t decide what he would love the best. His top 2 choices for sure would be pool or his ride on. #dravetsyndrome #fyp #makeawish #wish #bseizurefree #nottodaydravet #curedravet #💜 #🦋

This was another Make a wish option for B but our chapter doesn’t do pools so we finally decided to invest in getting one ourselves. I’m devastated our dream pool for our children has fallen through and we are out the money we paid. What do you do when a company closes without any notification and keeps your money without providing the service paid for? I will say I called 7 lawyers. 1 called back and wouldn’t even talk to me without paying 250$ an hour for advice . 😔#dravetsyndrome #fyp #help #advice #pool #lawyer #bseizurefree #curedravet #nottodaydravet #💜 #🦋

This was another Make a wish option for B but our chapter doesn’t do pools so we finally decided to invest in getting one ourselves. I’m devastated our dream pool for our children has fallen through and we are out the money we paid. What do you do when a company closes without any notification and keeps your money without providing the service paid for? I will say I called 7 lawyers. 1 called back and wouldn’t even talk to me without paying 250$ an hour for advice . 😔#dravetsyndrome #fyp #help #advice #pool #lawyer #bseizurefree #curedravet #nottodaydravet #💜 #🦋

So who’s the hero going to be that saves TT for us? I’m in denial already. You can find us on Instagram under the same handle, bseizurefree along on YouTube (although I haven’t posted on there yet). #dravetsyndrome #fyp #tiktokshutdown #tiktokban #savetiktok #hero #bseizurefree #curedravet #nottodaydravet #💜 #🦋

So who’s the hero going to be that saves TT for us? I’m in denial already. You can find us on Instagram under the same handle, bseizurefree along on YouTube (although I haven’t posted on there yet). #dravetsyndrome #fyp #tiktokshutdown #tiktokban #savetiktok #hero #bseizurefree #curedravet #nottodaydravet #💜 #🦋

Replying to @🤷🏻‍♀️ one of the best medical decisions we ever made was getting a VNS placed. Before his VNS B would have seizures that would last for hours. His VNS has dramatically improved the duration and severity of his seizures giving him a better quality of life. I wish we did it sooner. #dravetsyndrome #fyp #doctor #medical #vns #vagusnerve #bseizurefree #nottodaydravet #curedravet #💜 #🦋 #medicallycomplex

Replying to @🤷🏻‍♀️ one of the best medical decisions we ever made was getting a VNS placed. Before his VNS B would have seizures that would last for hours. His VNS has dramatically improved the duration and severity of his seizures giving him a better quality of life. I wish we did it sooner. #dravetsyndrome #fyp #doctor #medical #vns #vagusnerve #bseizurefree #nottodaydravet #curedravet #💜 #🦋 #medicallycomplex

Well we went a bit longer without a seizure. A full week. I’ll take it if it gives B a bit of a break. #dravetsyndrome #fyp #medicine #honeymoon #break #seizure #bseizurefree #curedravet #nottodaydravet #💜 #🦋

Well we went a bit longer without a seizure. A full week. I’ll take it if it gives B a bit of a break. #dravetsyndrome #fyp #medicine #honeymoon #break #seizure #bseizurefree #curedravet #nottodaydravet #💜 #🦋

I know you all love all the education on Dravet syndrome, but many of you are here to see B and his Mater. How we will miss our TT family if this is it. Thank you for all the love and support this past year for our son and all those in the Dravet community! 💜By the way, it’s pronounced Dra-vay💜 Not today Dravet! Hoping to see y’all over on Instagram or youtube at bseizurefree #dravetsyndrome #fyp #viralvideo #tiktok #tiktokban #bseizurefree #curedravet #nottodaydravet #💜 #🦋

I know you all love all the education on Dravet syndrome, but many of you are here to see B and his Mater. How we will miss our TT family if this is it. Thank you for all the love and support this past year for our son and all those in the Dravet community! 💜By the way, it’s pronounced Dra-vay💜 Not today Dravet! Hoping to see y’all over on Instagram or youtube at bseizurefree #dravetsyndrome #fyp #viralvideo #tiktok #tiktokban #bseizurefree #curedravet #nottodaydravet #💜 #🦋

Soooo what did you all do with your 15 hour TikTok break?! I’m celebrating my bday getting back on TikTok! Yay! #tiktokban #welcomeback #fyp #birthday #dravetsyndrome #bseizurefree #nottodaydravet #💜 #🦋

Soooo what did you all do with your 15 hour TikTok break?! I’m celebrating my bday getting back on TikTok! Yay! #tiktokban #welcomeback #fyp #birthday #dravetsyndrome #bseizurefree #nottodaydravet #💜 #🦋

Med changes are a frequent thing with Dravet Syndrome. Some meds may work for a bit of time then just stop. Many Dravet kids are on several meds to treat seizures. B has trialed over 12. #dravetsyndrome #medicine #changes #hope #bseizurefree #nottodaydravet #curedravet #💜 #🦋

Med changes are a frequent thing with Dravet Syndrome. Some meds may work for a bit of time then just stop. Many Dravet kids are on several meds to treat seizures. B has trialed over 12. #dravetsyndrome #medicine #changes #hope #bseizurefree #nottodaydravet #curedravet #💜 #🦋

A lovely Sunday with no seizures and lots of family time. B was bummed about the connect 4 but handled it pretty well leaving the store without it. Especially when he heard we were heading to @Red Robin Burgers hope you all had a lovely weekend! #dravetsyndrome #fyp #sunday #shopping #riding #bseizurefree #nottodaydravet #curedravet #💜 #🦋

A lovely Sunday with no seizures and lots of family time. B was bummed about the connect 4 but handled it pretty well leaving the store without it. Especially when he heard we were heading to @Red Robin Burgers hope you all had a lovely weekend! #dravetsyndrome #fyp #sunday #shopping #riding #bseizurefree #nottodaydravet #curedravet #💜 #🦋

For our new followers, a few things about Dravet. Not every Dravet kiddo is like B. Treatments are also different for each and some kids are able to have their seizures more controlled. Each one is a warrior that has been through hell and back. #dravetsyndrome #fyp #warrior #seizure #bseizurefree #nottodaydravet #curedravet #💜 #🦋

For our new followers, a few things about Dravet. Not every Dravet kiddo is like B. Treatments are also different for each and some kids are able to have their seizures more controlled. Each one is a warrior that has been through hell and back. #dravetsyndrome #fyp #warrior #seizure #bseizurefree #nottodaydravet #curedravet #💜 #🦋

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