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



  1. Thanks for sharing Ryann. It is great to hear what Bowen IS doing and that is also great advice from your friend. Always focus on what she can do and keep up the high expectations. The outlook from her first nuero won't be your last experience with medical or educational professionals limiting Bowen. Prepare yourself for the worst but expect and reach for Bowen's best! As always, I am here for you whenever you need me. - Aunt Debra

  2. Ryann, thank you so much for sharing about all of Bowen's progress. What a little trooper she is, and what an amazing mom you are. Does your brain hurt from learning so much in such a short time. You amaze me! Hugs and prayers always! Love, Aunt Cathy

  3. Bowen is proving that people are much much more that a diagnosis! She inspires me and so do ya'll!! Keep up the good work!

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