Tuesday, November 1, 2016

Epilepsy Awareness Month

Did I ever tell you that the neuro at TCH who initially gave us Bowen's diagnosis was the most rude and negative person ever? That she would never meet her milestones? Or be what we hoped she would be? I pretty much hate him. And I also love proving him wrong.

I don't say I can fully blame him though. Looking at a picture of her MRI you would see a few things. You would see that the right side of her brain is bigger than her left. You would see that her frontal lobe is abnormal. You would see that her parietal lobe is abnormal. You would see that she has too many folds on her right side. You would see that her corpus callosum is just not right. Sound scary? It is. You know what else is scary? Epilepsy. And the fact that we can't tell a seizure from a normal behavior. The fact that we don't know if the medicine is working or not. The fact that being hooked up to a fancy machine can't even give doctors answers. The fact that surgery will never be a black or white answer. 

But a few facts we do know is how much Bowen IS doing.
She currently says bubble, purple, turtle, mama, dada, more, this, ball, snack, night night, all done, open, help, and I LOVE THAT I COULD KEEP TYPING MORE WORDS. She is also pulling up, cruising, gets mad when I tell her no, bites her sister (then realizes she did something wrong and gives her a kiss), gives her baby medicine, pushes shopping carts, goes to school, loves school, and loves making friends.

We take nothing for granted and know that with HME things can change in an instant. So taking the advice of a dear friend and mentor of mine, we are soaking in and relishing in these moments and focusing on what she CAN do.

If you feel like reading more, here is more information on HME & epilepsy <3