“Out of curiosity, how does his version of ESES (J’s form of epilepsy) compare to other kids you’ve seen with it?” This is my question to the neuropsychologist in the neurology department – designated specifically for epilepsy patients – that we met with yesterday. I don’t know why I ask these questions. We have our…
Category Archives: Epilepsy
We’re at Camp – A Place I Never Thought We’d Be
Amid the chaos, we’re also off to camp. Today, is our second day here – third counting check in and the wine and cheese social that was planned for the first day…that was new. Camp is a relatively new experience for us. This is our second year, and we’re in the mountains of Colorado with…
Stop Staring at the Screen
STOP LOOKING! …at that screen I tell myself as I watch the squiggly lines of blue, green and red make their mark on the EEG monitor. It’s not like it’s going to tell me anything. It’s not like I’m going to stare hard enough, long enough, likely drying out my contacts…and decipher electroencephalograms on this…
Sleepless
I just noticed a not so funny thing about our home. Our routine has changed, our expectations or what can be expected in the nights shortly after we put our kiddos to bed, has changed. In the past, a pitter-patter of feet excitedly ‘sneaking’ across the floor could be heard within minutes of sending our…
Our Role & words hurt
So I was thinking, draw 3 circles on a piece of paper. One inside the other, so really you have 3 cirles around each other(as pictured) The inner circle is our children, this is their culture of being a child with special needs. The middle circle is us, the parents. We’re not in the…
learning…
Learning…I’ve not written about homeschooling yet so I thought maybe this would be a good time. Homeschooling isn’t so typical for us, we have many challenges to get over. We do use therapies as part of our daily routine (even if we are still on sabbatical from professional therapies at our local hospital). We do…
My Angel
I knew that my body was giving everything to this little person growing inside me. I knew my life would never be the same; that our lives would never be the same. There were no words to express the happiness I knew my belly contained. I knew that this little being was my angel; my…
Is that too much to ask?
This week my husband’s grandmother passed away. She was 93 year old, never took more than a multi-vitamin in her life. She did however, several years back, begin her journey with Alzheimer’s Disease. It was a long journey, spending 10 years in a nursing home. She had 5 children, 12 grandchildren…and so many great grand…
Reflections In Spring…We’ve Come A Long Way
How are we doing? It’s on my mind. Not for any particular reason except that spring is around the corner, and this is the kind of thought process I go through each spring. You see, spring is a time of renewal and while others clean, which I might find a way to get my hands…
Worrying About the Consequences of Injury Incidents
Enjoying the warmth of the moment, the neighborhood is outside. A few adults finding conversation, a flock of young kids finding themselves energized in a game of kick ball. It’s safe, it’s warm, friendly and fun. Until… I like to say C is our kids’ favorite toy. He can play any game with enough zeal…