2021: A Second Epilepsy Surgery Work-up, SEEG, and Epilepsy Resection Surgery
Brain Blips: An Epilepsy Journey
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2y ago
We were so hopeful.  Again.  That we were done. But we weren't.  And again, we aren't. With intractable seizures.  With epilepsy surgeries. And with pandemic surges. Awesome had another round of Epilepsy pre-surgery testing In the summer and fall of 2021. All this testing Culminated in a 13-day SEEG in October. And then in late November, Two days before Thanksgiving, All of Awesome's doctors' meticulous data gathering Careful analysis, Deliberations, discussions, and decision making-- Things at which they'd worked so long and diligently-- Came to fruition: Awesome had ..read more
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Winter Solstice Darkness
Brain Blips: An Epilepsy Journey
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3y ago
  It is the winter solstice.  The days are short, cold, and dark. There is little light. Or warmth. And very little good news. By the time we wake in the morning, There are only six hours of daylight left before it's dark again. We are under siege. Every day is the same. It is always night. In this endless year The Covid-19 pandemic with its mind numbingly scary Knowns and unknowns surrounds us. We shelter in our homes, Avoiding each other as if each of us Might be the Angel of Death in disguise. Two weeks ago Awesome's grandfather tested Covid positive.  Five days later ..read more
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Happy Birthday, Sweet 16
Brain Blips: An Epilepsy Journey
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3y ago
  "And she never gave up."  It's what her shirt says.   This girl,  Awesome, it’s her Sweet 16 today (during the Covid pandemic).    She is Smart. Talented. Kind.  Social.  Friendly.  Loyal.  Loving.  She marches to her own drum, joyfully and self-confidently.  She is strong and brave.  She is a fierce warrior who has faced and endured more in her 16 years than most people who are twice or three times her age.       She said her first words at 6 months, was talking in sentences at 1 year, and was r ..read more
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Six Months Ago: SEEG Surgery Day
Brain Blips: An Epilepsy Journey
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4y ago
Today is the 6 month anniversary of Awesome's SEEG surgery.  There are some days and life experiences that you will never forget.  That day was one of them.   Early January in New England.  Cold.  And at 4:30 AM, very dark.  We'd choreographed the morning plan, rehearsing it over and over again in our minds, looking for holes--for things we'd forgotten.  In those kind of situations, one does everything possible ahead of time.  We'd laid out our clothes for the day.  Packed Awesome's and my suitcases.  Put coats and boots by the back do ..read more
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Covid-19 Distances
Brain Blips: An Epilepsy Journey
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4y ago
We live in such strange times. Housebound. Isolated. More germ-phobic than Monk. Characters on TV amaze with their casual attitude Towards being physically close to each other. Were we too once brave enough to be close? Was there really a time when we didn't shrink At the thought of being in close physical proximity to Other human beings--whether family, friends, or strangers? Did we really once crowd together in groups? On elevators, in airports, at weddings, and everywhere? Did we really once share the same airspace? And not worry? Was there really a time when we didn't shrink At the ..read more
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The Ever Moving Finish Line on Beyond the Unmapped Mountains.
Brain Blips: An Epilepsy Journey
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4y ago
As you recover from a seizure Your service dog and I watch over you With love and concern. And I think of the ironies Of the situation in which we find ourselves. I think about how In the middle of hardest January Following close on the heels of scariest December, You cried and declared, That you could not go on.  That what life had handed you, That what was being demanded of you In January Was too hard. That you could no longer do it. (Though we both knew there was no way out Except by enduring the hard things before you.) And I told you Not to give up then. Because you were in view ..read more
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Post-Epilepsy-Surgery: Recovery Uncertainties
Brain Blips: An Epilepsy Journey
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4y ago
Epilepsy is all about uncertainty And unpredictability From moment to moment From hour to hour, From day to day We're on the other side of Epilepsy Surgery But the uncertainty is still there. We live with it every hour of every day. And it's not just the usual Uncertainty and unpredictability of seizures. But it's also now, the big picture of not knowing Whether we're on the amazing threshold of a new life Without seizures. Or whether we've traveled a long way Simply to end up back again Exactly where we started at the beginning. Or perhaps somewhere in between: Doctors can't give us an ..read more
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Epilepsy Surgeries Happened in January
Brain Blips: An Epilepsy Journey
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4y ago
It's been a very long journey with a lot of twists and turns, but after two Phase 1 testings at two different hospitals in two different regions of the country, and after three different Children's Hospitals' epilepsy surgery conferences--encompassing scores of the best neurosurgeons, epileptologists, and other epilepsy medical professionals in the US--considered, debated, and weighed in on Awesome's case, Awesome finally had two epilepsy surgeries in January. On January 9, Awesome had a five hour SEEG surgery to insert 10 electrodes directly into her frontal lobes via burr holes in her skul ..read more
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Epilepsy Awareness? Nope
Brain Blips: An Epilepsy Journey
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4y ago
As we were leaving the hospital yesterday with our daughter Awesome who has intractable epilepsy and who'd just undergone pre-surgery neuropsychological testing, we were waiting to turn left onto a main street that runs through our local state university.  And as we were sitting there at the stop light, which is right across the street from the one of our Children's Hospital's parking decks, I saw two enormous (story-high) purple ribbons affixed to the front of one of the university's buildings.  I pointed them out to my daughter. Awesome, who is always noting how no one cares abou ..read more
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Five Minutes
Brain Blips: An Epilepsy Journey
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4y ago
Five minutes isn't a long time, Except when a child is seizing. And then it's an eternity. And ten minutes Is the equivalent of two eternities--  And two eternities, without intervention Can become a serious--even a life-threatening-- Medical emergency -------------------------- I can't put into words the emotions I feel As I glance at the clock on the wall, And once again rise from my chair On the edge of the circle of moms. Five minutes have passed since I last saw Awesome.   But I must go find her again To make sure, once again, that she's safe. And that she isn't seizing ..read more
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