WELCOME TO THE OWL'S NEST
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MY HEART HAS BEEN BROKEN THIS PAST WEEK, AS WE HAVE ALL WITNESSED THE HORRIBLE DEVASTATION THAT HURRICANE HELENE HAMMERED UPON OUR BEAUTIFUL MOUNTAIN COMMUNITY!
PRAYERS & LOVE TO ALL MY WESTERN NORTH CAROLINA
MOUNTAIN FAMILY!!!
ONE THING I KNOW IS THAT MOUNTAIN PEOPLE ARE HANDS DOWN A WHOLE 'NOTHER ENTIRE BREED OF FOLKS- ON THEIR WEAKEST DAY, APPALACHIAN FOLK ARE THE MOST RESILIENT PEOPLE THERE ARE.
WE ARE TOUGH AND WE ARE SURVIVORS.
IT WILL BE A GOOD WAYS OUT, BUT, OUR MOUNTAIN NEIGHBORS UP THE ROAD WILL GET THROUGH... COME HELL OR HIGHWATER...
ALTHOUGH THE CREEK, THIS TIME, DID INDEED RISE-
SO WILL THESE MOUNTAIN PEOPLE;
AND THEY WILL RISE HIGHER
AND THEY WILL RISE STRONGER.
PLEASE CONSIDER DONATING TO A DISASTER RELIEF ORGANIZATION. PLEASE CONSIDER OUR DISPLACED FOLKS AND LOVING PETS.
PLEASE CONSIDER THE MONTHS AHEAD AND HELPING TO SUPPORT THE REBUILDING AND RE-ESTABLISHMENT OF OUR WNC COMMUNITY.
PLEASE CONTACT ME IF YOU WOULD LIKE INFORMATION
ON SOME GREAT INDEPENDENT ORGANIZATIONS
TO GET INVOLVED WITH OR IF YOU WOULD
LIKE TO MAKE A DONATION.
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Welcome to My Nest! Here, we raise awareness, share our story, create, educate and advocate. Join us as we create a community dedicated to making a difference together- I'm so humbled to share this journey with you!
Come on in and sit a spell...
If you were flying by and landed here, I'm one of those kind of people that believe it wasn't by mistake, and that for whatever the reason, you were meant to be here...
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I invite you here into my Owl's nest to perch down beside me and take a look at the world from an Owl's eye view- from my perspective. I am not wise and full of wisdom like the owl, but I am full of life experiences and lessons- and a tremendous amount of hope and spirit. I have a passion for learning and advocating and an obligation to share any knowledge I gain.
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I am not a Physician, OR a professor, OR a therapist, OR an expert by any means on anything, but, I am a Mama. I am a Mama that has made it a priority to speak louder than the "grim diagnosis" we were handed. I speak louder than the doubt that sometimes tries to creep into the back of my mind. I speak louder than the stroke that caused the brain damage that my child lives with everyday; louder than the debilitating epilepsy that has attempted to steal his quality of life. I speak louder than the misinformation, louder than the judgements, louder than the dirty looks from those that just don't understand, louder than the doubt. In speaking loudly, I am taking back our power, I am fighting the good fight and manifesting and believing that WE WILL beat this beast that has become such a heavy burden in our lives. Epilepsy picked the wrong kid- and it damn well sure picked the wrong Mama...
My hope is that The Owl's Nest will be a space where you can hear me.
For all the parents who have been handed a shit-hand and given the diagnosis that your child "is going to require more"- YOU HAVE A SPACE RIGHT HERE BESIDE ME. For every Mom or Dad who has spent hours of your lives in doctor's office waiting rooms for way too long, or on uncomfortable pull out beds in hospital rooms, waiting for results, walking the floors consumed with worry, waiting for that next phone call or test result notification or appointment- YOU HAVE A SPACE BESIDE ME. For every parent or grandparent or caretaker who has been exhausted from pulling all-nighters caring for your medically fragile child, dealing with pharmacies and insurance authorizations and pill organizing and administering meds; for every parent attending IEP's and 504's and fighting and advocating for your special kids needs and accommodations and your rights as special needs parent- YOU HAVE A SPACE BESIDE ME. For every Mama that runs into the bathroom at the first opportunity because you're just so tired, so frustrated; because you just want to scream- I UNDERSTAND. For the Mama who turns on the shower and pulls the shower curtain closed- and finally allows herself to fall apart-it's okay- just cry, friend.
I've been there too. We all have.
YOU WILL ALWAYS HAVE A VERY SPECIAL SPACE RIGHT HERE BESIDE ME.
I send you all my strength and love and from the depths of my soul- YOU ARE NOT ALONE!
I HEAR YOU.
I'M SO GLAD THAT YOU ARE HERE.
♥♥♥
Our Passion is Our Purpose and Our Mission is spreading PERNIATAL STROKE and EPILEPSY awareness.
We are committed to advocating, educating and breaking down barriers about prenatal and neonatal brain injuries, early stroke and seizures
Our Passion is Our Purpose
When my second son, Rylan, was born in 2008, I had no idea that what lie ahead would take us down paths and trails with so many road blocks. I would never had dreamt that we would encounter so many challenges along the way. Having a child changes your life in so many ways, and being a mother is my greatest blessing, biggest contribution to the world and most important job. When we learned a few months after his birth that Rylan had suffered a perinatal stroke (a stroke in utero), I was shocked and in disbelief. His diagnosis was the beginning of so many life lessons, challenges, struggles and a few tears- but it has also brought the most inspiring, motivating, encouraging moments to myself and my family,..
THE MISUNDERSTOOD
DIAGNOSIS OF
EPILEPSY
Epilepsy is one of the most common neurological disorders in the world, and concurrently, one of the most misunderstood.
As of May 2024, it is estimated that over 450,000 children in the United States have recurrent seizures and are living with epilepsy.
Epilepsy is a brain disorder that causes recurring seizures. Seizures are sudden bursts of abnormal and excessive activity in your brain.
There are many different types of seizure activity and many different causes for seizures. Some common causes for seizure or epilepsy are:
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-a sudden infection or illness
-genetic or metabolic abnormality
-high fever
-stroke or TBI
-adverse reaction to a medication
-withdrawal from a substance
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Seizure type:
-Simple focal (partial) seizure
-Complex focal seizure
-Absence seizure
-"Drop" seizure or Atonic seizure
-"grand mal" or Tonic-Clonic seizure
-Myoclonic seizure
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Symptoms of seizure depend on the type of seizure and can present in many different ways:
-staring or absent gazing
-jerking of arms/legs
-stiffening of the body
-loss of consciousness
-breathing problems
-loss of bowel/bladder control
-falling or syncope
-confusion or loss of awareness
-nodding of head
-periods of rapid eye blinking and movement
-loss of verbal communication
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Early intervention is key. The goal always is to control, reduce or stop seizures completely. Many medications and treatment options are available and most people who suffer from epilepsy are able to continue independent and normal functioning lives when treated properly.
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STROKES DON'T DISCRIMINATE
The most common reaction that I get when people find out that Rylan had a stroke in utero is an expression of confusion. When I explain that my son suffered a stroke before he was even born, that expression of confusion turns to one of disbelief. If I had a dime for every time someone has dropped their jaw in complete shock of this revelation, I'd be living the life, saving sea turtles in Tahiti.
There is this misconception that stroke only happen when you get old. Most people have no idea even what a stroke really is or what exactly occurs in the body when someone has one.
Stroke is a disease that affects the arteries leading to and within the brain. It is the #5 cause of death AND disability in the United States.
A stroke occurs when a blood vessel that carries oxygen and nutrients to the brain is either blocked by a clot or ruptures. When that happens, part of the brain cannot get the blood and oxygen it needs, so it and brain cells die. My son had an ischemic stroke in his left temporal lobe. Rylan's stroke was significant and affected the right side of his body. Rylan had his first brain MRI at around 6 months old and since then we have had several brain scans. Because of a special refractory epilepsy MRI performed at Duke University Hospital just this past June, we now have more information about his stroke site, and that the damage from the stroke was more severe than any of us ever realized. We now know that my son's stroke went deeper than first thought- very deep indeed. Deep enough to affect very important functions in our brains. Too deep for any conservative treatments, and so, Rylan will undergo a radical hemispherectomy brain surgery in which the neurosurgeons will remove the entire left hemisphere- the diseased, stroke affected hemisphere, leaving him with only half his brain. This decision was made unanimously by a very wonderful and knowledgeable team of neuro specailists, and for the first time in our lives, we have been told that this could be CURATIVE for my boy!
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The American Stroke Association is a very good resource and has a wealth of information for anyone facing stroke or facing the life as a caregiver of a loved one affected by stroke. They have an amazing tool kit that you can download and I will provide the link here:
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https://www.stroke.org/en/help-and-support/resource-library/prevention-toolkit#
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As a healthcare worker, an acronym that we are encouraged and expected to know is:
BEFAST:
B= Balance- watch for sudden loss of balance or coordination
E= Eyes- assess for sudden vision loss, or blurred or double vision
F= Face- Notice any facial changes- one side of the face may be drooping or may be numb
A= Arms- find out if there is a loss of feeling in either arm, or if an arm feels "heavy", "weak" or "numb"/"tingly"
S= Speech- Is speech slurred, difficult to understand or is there an inability to talk or loss of verbal communication
T= TIME is TICKING... Early interevntion is KEY!!! Call 9-1-1 IMMEDIATELY if you see ANY of these symptoms- EVEN if they go away.
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BEFAST may not be applicable for perinatal or in utero stroke, but there are also cues and symptoms parents should take not of if they see their baby or child experiencing strange behaviors. I have included a list of what to look for below.
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Sources: International Alliance for Pediatric Stroke
American Stroke Association
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To learn more or for more info and a list of resources, please visit: Stroke.org
