Help Me Feel like a Rockstar!
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 cap will help ease my anxiety and make life easier on everyone involved with my care.
And Just a Bit More About Me
Ethan was born with a bleed on his brain that led to him developing hydrocephalus. We were told that he would never walk, talk, or be out of diapers. We were also warned he would have seizures because of how severe his brain was damaged. By the time Ethan was a year old, and after lots of prayers, hard work, therapy, and a couple surgeries, he started to prove the doctors wrong. By the age of 3, he was talking, walking, and he was potty trained!
Ethan was making great progress until July of 2012 when he began having seizures for the first time. The next 5 years would be some of the darkest times in his young life. Ethan had lots of appointments, medicine changes, tests, procedures, hospital stays, and multiple surgeries to try to control the 30-100 seizures Ethan was having each day.
The little boy who had worked so hard to prove the doctors wrong began to slip away.
During an ICU stay that lasted from Christmas Day well into January of 2017, Ethan had a VNS surgery as a last ditch effort to control his seizures. It would take a few months, but eventually Ethan was able to experience seizure freedom for the 1st time in almost 5 years with 4 seizure meds and the VNS.
There has always been something special about Ethan. He can light up a room, and make a complete stranger smile. He’s kind and caring, and he has a heart of gold. Thankfully he has been seizure free for just over 3 years now, so it’s time to have some more tests to get a good look at his brain to see where we go from here. Our prayer is that we can start to take away some of the seizure meds and get even more of our boy back. We are thankful for Hannahtopia’s Warrior Program and only wish we would have found them years ago to make our hospital stays a little easier. Ethan is excited to show off his NillyNoggin in a couple weeks when he visits his EEG friends at CHP.
Follow our journey: