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November is Epilepsy Awareness Month

Derik and I raise money for Cystic Fibrosis year around. We have never raised money for epilepsy. Let me tell you why. CF is easier for us to deal with than epilepsy is. I'm not comfortable with epilepsy yet, even after seeing my daughter struggle with seizures for three years. We avoid it, because it's a touchy subject. But, with that said, November is Epilepsy awareness month, and in honor of my sweetest Zoie, since Nov has 30 days, I give to you 30 things we, not everyone, has experienced with seizures and epilepsy. I'm hoping this helps me by opening up a little about a "not so easy" subject, and that it let's you all into our world a bit. With this, be kind to the families, friends, and people who struggle with epilepsy on a daily basis. It's not easy. *Zoie had her first seizure when she was 2.5 months old *She was originally diagnosed with meningitis *at 4 months she was diagnosed with microcephaly or small head which was now the cause of her epilepsy *Keppra, the most common seizure med didn't work for her *She has had 6 EEG's which are monitors on the head that watch brain activity *we hate EEG'S, because how are you supposed to hold her head still for 2 hours while getting all the monitors on *we have had to call 911 over 40 times the last three years because of seizures *we have been admitted to Chikdrens 12 times for seizures *we spent last Christmas in the hospital because of them *we give a rectal med called diastat Everytime she has one lasting over 5 minutes *Zoie sleeps for 3-4 hours after a seizure *sometimes they last 10 seconds, sonetines 3 hours *they dehydrate her *we have oxygen at home because she turns blue during some *we have tried 8 different medications to control seizures *Zoie is currently on three meds *her seizures are semi-controlled *if she gets sick she has more *if she's tired she has more *over stimulation can cause them *we have a neuro doctor and an epilepsy doctor *she has only had one MRI *Zoie is still most of the time if she has one *she can't have brain surgery to help bc they happen on both sides and they would be taking too much of her brain *she has a VNS implant in her chest *Zoie recovers from a seizure after about 12 hours *we pray wih her when she is having one *we sing to her mellow songs while she is having one *seizures never get easier *we hope one day she won't have them anymore This is my way of spreading awareness for Nov and for Zoie! I had no idea what seizures even were before Zoie. Now we know all too well. But, I'm glad it's Derik and I getting to take care of her and not someone else ;) love you Z

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