Sunday, February 26, 2012
March for Maura
Looking back over the past month, I'm not quite sure where February went. To be quite frank, I'm glad it's gone. It won't be missed by me. Nor my wife. Least of all by my daughter.
Late January the neurologist gave the go ahead ween Maura off Topomax over a three week period. She was five months seizure free, and we felt quite confident Keppra could singularly control her epilepsy. And she did well enough. Five months seizure free. The weening appeared successful.
That was thirty days ago. Twenty seizures later.
Her incidents started the weekend immediately following her last dosage. My work week became a blur of mid-day text messages bluntly declaring, "Maura had another." Wanting nothing more than to rush home, but I'd have to slough through the rest of my work day instead.
Even if I could be home, there was nothing I could do to prevent her seizures. Actually, there wasn't much that could be done following in the wake. Other than perpetuate a feedback loop of anxiety over where and when she would have another episode.
In speaking with the neurologist, we've decided to place Maura back on a light dosage of Topomax and adjust as necessary. The thought of having an epilepsy-free child who doesn't require daily medication was nice, but it's far better to actually have her seizures completely under control... no matter how many medications this requires.
I can't believe my little daughter will be 10-months-old come March 2nd. Or that she will be a year old. My wife came up with the brilliant idea to participate in a March of Dimes to commemorate her first revolution around the sun. To celebrate the other preemies born this year. But most of all, to provide support to families who have yet to endure weeks (if not months) in the NICU.
My wife has set a goal to fund raise $500. I'm personally aiming for $100. Check out my fundraising page if interested in making a donation towards our March for Maura to donate to the greater good of March of Dimes: http://www.marchforbabies.org/janalon