My son Nick has a rare, debilitating, life threatening disease called Lennox Gastaut Syndrome. For over 38 years I have been consciously aware that with LGS he has an increased risk of unexpected premature death. There is even a name for it. ...... Read More
Nick has strong opinions on what he considers the correct timing of things. Yesterday was Thanksgiving and today begins the Christmas season. First thing this morning he began singing Christmas carols. Sometimes during the year, I tease him a...... Read More
There were many things that I loved at the second day of the LGS Foundation Conference in Orlando. There were thought provoking presentations on various topics including LGS research, new drug therapies, surgical options, devices, plus genetics...... Read More
Arden, Nick and I are in Orlando, Florida, attending the LGS Foundation Conference 2017. For those of you who don’t know, Lennox-Gastaut Syndrome, or LGS is the syndrome that Nick has. It is a rare epilepsy disease that shows specific...... Read More
This week we received a follow-up call from Nicks neurologist. Nicks seizure med blood levels weren’t optimal so he increased one of the doses of one of the meds. It is a dose Nick has taken before when we would be traveling and he needed...... Read More
Every once in a while we all need a break from our typical routine. When I was a young mom, a wise man told me that “A change was as good as a rest.” We all look forward to our scheduled vacation time. However, if we are...... Read More
This blog I wrote is in response to queries I have received. The answer is YES you can travel. However some pre-planning and organization can help make the trip more relaxing. Planning Your Trip: Familiarize yourself with where you are...... Read More
We have all had those days. They start out great, amazing in fact. And then somewhere in the middle, a crisis rears its ugly head. Sometimes we are caught completely unawares and other times we know “the particular event” is...... Read More
Yesterday Arden and I witnessed another Nick miracle. I took a picture. Over the weekend I had been playing Bananagrams with friends. It is a game where lettered tiles are used to spell words. Nick was struggling to pick up the tiles. We...... Read More
In the early 1980’s there was a dessert place in Seattle, that had the marketing slogan, “Eat Dessert First, Life Is Uncertain!” Arden and I adopted this as a family motto. Circumstances always remind us that life is uncertain...... Read More
Nick has been having a wonderful time in Ireland, until just after 10:00 pm Sunday night. Without warning, he had about 30 minutes of pretty intense seizures. It was particularly terrifying. Once the seizures had stopped, it took a little...... Read More
NORD, or the National Organization for Rare Disorders truly is a life-saving organization. NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through...... Read More
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