Da Hughes Ohana: Dealing with epilepsy

So everyone knows Isla has been having seizures since she turned 6 months. We still haven’t figured out the cause, whether it’s due to the immunizations she got at 6 months, genetics, brain damage, etc. I know in the grand scheme of things, it’s not a big deal, she’s healthy and growing and no other problems. She just has to take medication twice a day to control it. For that, I’m grateful. So I don’t like to complain about my life, because I love my life. But when I see my daughter hooked up to wires, it just breaks my heart. Today she did her MRI and EEG. The neurologist wants to see if there is anything going on in her brain, she suspects something on her right side, because she doesn’t use her left side of her body as much as she should. It’s hardly noticeable, but when she eats, or waves, or plays, she mainly uses her right hand. Plus she isn’t talking much either. So we find out next week *I think* if her brain scans are normal. She had these tests done at 6 months, and at the time they were normal, but they said she might have been too young to detect anything. So now we are waiting and worrying, hoping it’s nothing serious. I’ve accepted the fact that she has to take meds every day and see the neurologist every other month. I guess what’s hard for me is trying not to be so overprotective of her. At the playground I’m the only mother that follows their child’s every move, because I’m worried she’ll fall, hit her head and have a seizure. Every time she has a sniffle or a low fever I start to panic, wondering if I need to take her to the ER or if she’ll have a breakthrough seizure. When she’s in the water I get a little apprehensive. I know I need to lighten up, but it’s so hard. Especially since she’s so rambunctious and wild, and clumsy and falls down a lot. Anyway, today at the hospital, they couldn’t get the IV in, they poked her twice in one arm, once in the other, then on her leg, finally they had to call in the special IV team to do it. I wanted to scream at them to stop hurting my baby! She was crying and so sad and I felt so helpless. I hate seeing her go through all this. Plus I couldn’t give her anything to eat or drink since last night, and keep her up all night, wake her up real early (they wanted her drowsy), so she was one tired, hungry and angry kid! It’s been a long day.

These pics were taken with my phone so they aren’t the greatest.