She loves her brother SO MUCH! She's not even 2 & has taken on the "mommy role" to help take care of Cole. If he comes near something dangerous...she tells him "oh, no no Coe, careful-careful" or if he's crying she says "Coe cry, Coe sad, Coe sad" & rubs his head & kisses him to comfort him. Every night, she helps tuck him into bed, turns his fan on, gives him a kiss & closes the door. Her ability to forgive him over & over no matter how many times he hits or pulls her hair never ceases to amaze me. I'm SO glad this Special little boy has a Special little sister who LOVES him SO MUCH!!! (This is a photo of her pushing him in his stroller).
I wish strangers knew his story. Maybe they would be more tolerant. Tonight, we went out and Cole was shrieking and an older man turned around and kept looking a us in DISGUST & ANGER, while shaking his head. The last time he turned around, he was about to say something and before he could, I told him, "he has Special Needs, I don't need you shaking your head at me!". I typically try to ignore the dirty looks and comments...but it's been a tough week & I crumbled. At first I was so angry & then I lost it...and cried in front of EVERYONE...it's been a few hours & the tears keep coming. I know he doesn't know Cole or us, but I feel like people treat us like we are "from another planet" and were thrown on the Earth to see if we could survive the constant mocking of Cole's behavior, sounds & movements...and the judgement from others, BECAUSE Cole looks like a typical 6 year old. And then getting the crap beaten out of us emotionally, physically & financially. I feel like a failure everyday, but at the same time, I feel proud of myself for making it through another day. It's hard not to feel ALONE. That man doesn't know that we are BARELY "hanging on" & tonight, he stomped on my "fingers" while I continue to hand on for dear life. Regardless of what others might think or what I think of my self...I hope Cole knows how much I love him. Because of him, I am a better person. I hope he knows that I am trying my BEST, even though my "best" never feels good enough.
We met with the neurologist last week & had a follow up EEG. It was hard to be back at the Children's Hospital. We basically had a year off from the " Epilepsy world" and it was WONDERFUL. No hospital visits, no procedures: EEG's, MEGscans, MRI's, PETscans, blood work etc. It was a much needed break emotionally, physically & financially. ....I forgot how EXPENSIVE everything is! Anyways, his EEG was similar to the last EEG a year ago...however it showed spiking on BOTH the left & right sides...and ended in the frontal lobe...which is consistent to "head nod seizures we have been seeing. So what's next??? Another med. His Neuro wanted to try Depakote. With Cols track record of having "more" seizures or a "new" seizure type from seizure meds...we decided to hold off on Depakote to try a few other things. Another blogger mom recommend we try Frankincense Oil (I don't have your email to contact you by the way...can you leave it in the comments!) and the Atkins Diet. Remember when Cole was on the Ketogenic Diet when he was 2 & his seizures went from 150+\day to 20/day....I thought since he did so well seizure wise on the diet, maybe the Atkins Diet would help just enough to keep those head nod sz away. So...stay tuned as always! This kiddo always has us on our toes!