I am SO excited to receive my NillyNoggin cap!
I’m even more excited to be part of the Warrior Troop at Hannahtopia.
The Troop is made up of amazing warriors like me – kids and adults who face medical challenges every day. Hannahtopia helps us by bringing fun, color and comfort to our lives. Creating positive happy moments. Happiness is SO important – it helps with the healing process!
My medical condition requires me to get EEG tests that are very medically sterile looking and often scary.
Sometimes an EEG is worn for days, in public, and people often stare. The NillyNoggin covers up this scary medical look. It puts a positive, happy twist on the EEG procedure that some of us have to get a lot. The NillyNoggin cap is comfortable and colorful! Lots of people will come up to talk with me ’cause it’s so cool! It will also give me confidence and comfort!
This is My Story
Holy Moly, I started my journey 17 years ago! and guess what … one of my old doctors said I more than likely wouldn’t live to be a teenager. We count our blessings EVERY SINGLE DAY and we NEVER take a day for granted. My most favorite past-time is laughing and being so darn silly so this is why I wanted to share this picture 🙂 I kind of lost my ability to smile and laugh like I used to, in fact as I have gotten older, I lost my ability to talk and eat and drink. Every once in awhile my brain will trigger me to smile and laugh but all of the seizures and meds have limited my abilities. Thankfully I was able to get a G-Tube in my belly and now I get all the nutrition I need and never have to miss a dose of my seizure meds.
So my doctor diagnosed me with Lennox Gastaut Syndrome but we are still looking for more answers. My Mom and I will never give up trying to find the root cause of my seizures and we will NEVER quit searching for answers to stop my seizures completely.
I have had over 100,000 seizures. Most of my seizures now are the ones that many people think of when someone has a seizure … drop to the floor and convulse (shake) uncontrollably. Seizures are scary there is no doubt about that. Hospital visits were so common that we started calling it the B&B (bed and breakfast).
EEG’s … yep … I’ve been through many many EEG’s. I can tell you I did not like any of them. As I am getting older, I bet I’ll tolerate them better … they’re just so darn scary at times when they put those wires on. And then people tend to just look at me and wonder. I hear the NillyNoggin will really help with my anxiety and that they are comfortable! Also that lots of people love to ask questions and talk when they see someone wearing one … which is really cool because most people stay away from me when I have it on 🙁
EEG’s are a routine part of my life so I want to make sure that I get a NillyNoggin EEG Cap and keep it in my “hospital GO” bag at all times. I have to keep a bag packed for the hospital at all times because a major seizure can happen at any time and require an emergency room visit.
Now despite these challenges, I’m still a pretty cool kid through all of this 🙂 I have a facebook page: H2forMMJ. Follow along our journey if you wish 🙂
Thank you for learning alittle bit about me and for helping support me and my other warrior friends <3