Our Lives with Epilepsy: Part 3 Proving It

December 9, 2012Advocacy No Comments

In August we came up against the toughest part of her seizures to date. That’s when her seizure  clusters just got completely out of control. Before that we had a good thing going really. While the “seizure days” were tough they came about once a week, and they started to feel manageable. We didn’t have … Read More

Our Experience with Epilepsy: Part 2 Medication and Doubt

November 28, 2012Advocacy 2 Comments

So, continuing our story of life with Esmé’s epilepsy, I will pick up when we finally started her on Keppra after a clinical diagnosis of epilepsy over six months after her first apparent seizure. Everyone said that Keppra was one of the anticonvulsants with the lowest rate of side-effects. And, like with all anti-convulsants, we … Read More

Ann Coulter and the R-Word: Part B

October 26, 2012Advocacy, Special Needs Child No Comments

You know I hate to spend two days talking about this horrible woman Ann Coulter, but after listening to her defend her use of the word “retard” on Fox News Radio, I can’t help myself. In her appearance on Alan Colmes’ Thursday Radio Show she claims that she does not regret the use of the … Read More

Jake and Ethan

October 22, 2012Advocacy 2 Comments

This weekend we went to a fundraiser for a local charity, Jake’s Help from Heaven. The charity was started by a family–Heather, Brian and their son Ethan–who lost their son and brother, Jake, to an undiagnosed disorder that onset when he was 8 months old. The charity helps families of medically complex and fragile children … Read More

I’m Eating Here

October 19, 2012Advocacy, Special Needs Child No Comments

So, honestly, for every few people out there who make you feel that the potential for human kindness is limitless there is an asshole…placed there to balance out the system. I have been a bit on a high about how thoughtful and kind people can be when given the chance. For this reason I have … Read More

Pro-child

October 11, 2012Advocacy, Special Needs Child 1 Comment

I’m sure lots of you have seen a recent meme circulating on facebook and the like of a quote by a Benedictine nun named Sister Joan Chittister. She says: “But I do not believe that just because you’re opposed to abortion that that makes you pro-life. In fact, I think in many cases, your morality is … Read More

Insurance

September 25, 2012Advocacy, Special Needs Child No Comments

I am on the phone with insurance, again. Ezzy has needed a series of genetic tests done to help up in understanding the nature of her disorder (or disorders, yes it may be multiple things). These tests are not cheap. There is one that sequenced three genes for collagen disorder and another that will sequence … Read More

Flexibility

September 23, 2012Advocacy 2 Comments

Several medical professionals have told me that Esmé is the “lowest tone child they have ever encountered.” You know, these days it takes a lot to stand out, but my girl is invested. Now, an astounding number of genetic conditions come with low tone (hypotonia) on the list of symptoms. But to be the lowest tone … Read More