March 6, 2018
Sucked.
Bowen has been seizure free on her medicine since 2016. Then in the middle of nap time, she seized just as similar as she had when she first got diagnosed. Two minutes and twenty seconds. It didn't hit me until a few minutes ago. When I decided to pick up my computer and write this. I have no idea why. We haven't really told many people yet or processed it fully.
Everyone knows how much I love the STARS program. How much they have meant to us. Not only did they handle everything perfectly, but they caught the seizure during her sleep, took the best care of Bowen anyone could have, and comforted Brett and I in ways we can never thank them enough.
Because of her teacher's write up about the seizure (love you Meredith), her doctor was able to pinpoint EXACTLY what happened, what was going on in her brain, and what her future plans are.
Everything is day by day. We've known that since the beginning. But I feel like we've been in this blissful no seizure phase (at least the big outward ones) since the day of her first seizure in 2016 that led to her diagnosis. But in the back of our minds, we knew that this day was possible. Where she would essentially ''fail'' her first medicine and have to move forward to other routes.
We are adding a second medicine this week and then will be admitted to TCH in the next months for further evaluation.
For some reason blogging is therapeutic for me, and even though I haven't since June 2017 (thanks Harvey), I really long to get back into it.
And I love STARS more than ever. The entire program. The staff. The teachers. The therapists. And the entire preschool and every single person there that makes it run. So I will continue not only to fight for what's best for Bowen, but fight for this program which showed their support for her when she needed it most. March 6, 2018.
xoxo,
ryann
Bowen has been seizure free on her medicine since 2016. Then in the middle of nap time, she seized just as similar as she had when she first got diagnosed. Two minutes and twenty seconds. It didn't hit me until a few minutes ago. When I decided to pick up my computer and write this. I have no idea why. We haven't really told many people yet or processed it fully.
Everyone knows how much I love the STARS program. How much they have meant to us. Not only did they handle everything perfectly, but they caught the seizure during her sleep, took the best care of Bowen anyone could have, and comforted Brett and I in ways we can never thank them enough.
Because of her teacher's write up about the seizure (love you Meredith), her doctor was able to pinpoint EXACTLY what happened, what was going on in her brain, and what her future plans are.
Everything is day by day. We've known that since the beginning. But I feel like we've been in this blissful no seizure phase (at least the big outward ones) since the day of her first seizure in 2016 that led to her diagnosis. But in the back of our minds, we knew that this day was possible. Where she would essentially ''fail'' her first medicine and have to move forward to other routes.
We are adding a second medicine this week and then will be admitted to TCH in the next months for further evaluation.
For some reason blogging is therapeutic for me, and even though I haven't since June 2017 (thanks Harvey), I really long to get back into it.
And I love STARS more than ever. The entire program. The staff. The teachers. The therapists. And the entire preschool and every single person there that makes it run. So I will continue not only to fight for what's best for Bowen, but fight for this program which showed their support for her when she needed it most. March 6, 2018.
xoxo,
ryann
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