Tuesday, February 21, 2012


It's been awhile since I posted anything. I guess things have gotten very intense and I needed to back away from it all for a while, but I've had people write and ask for an update, and there is a lot to share.

In the fall, we finally found B a good high school Life Skills program. The program is a good fit, and for the first time in her whole school experience, B does not feel set apart from her classmates, as they all have developmental and health concerns like hers. She's made friends, and has a boyfriend, which is very sweet. She kissed him, and I think they hold hands at lunch. She also now has a BFF, who phones her at home and demands that I get her a puppy as well. It makes me happy to see her chatting on the phone with a friend.

She continues to have anger and behavioural issues, which her neurologist thinks is related to her seizure disorder. We have a behavioural consultant, but last week she beat me up twice, and I admit that it can be hard for me to read about my friends and their kids, and how they are excelling at school and socially, when last week it was all I could do to physically wrestle B on to the bus, in her pajamas and covered in hot chocolate. Standing on the street and holding her while she punched me, people stopping to stare, I felt horrible and sad for her. And me. The behaviour consultant is nice, but her recommendations so far are mostly things we already do, but still, I have to try.

B's seizures are back, although her seizure patterns keep changing. We've exhausted all the medications, save one. That med is Keppra, and it is so expensive that we need special government permission to get it. A friend from the states said it cost more than her mortgage each month. But I can't give it to her, because it can increase her behaviour issues, and of the two, the behaviour issues can cause the most problems for her.

In lieu of medication options, I instead decided to have her assessed for surgery. We spent a week in the hospital, with B hooked up to an EEG, tied to the wall by a fifteen foot cord, lights on 24 hours a day, and sleep depriving her. She didn't have one seizure. She had discharges, but it was not enough, so we need to do it again. She did have a new MRI, which showed a huge scar in her right occipital and parietal lobe, and that the right side of her brain is significantly smaller than her left. Still, she is amazing in how much she has compensated, and is a walking testimony to the plasticity of a baby's brain.

As for me, I have been trying to maintain a good balance between caring for her and caring for myself. I have kept up a consistent Paleo diet, exercised regularly, and am nearing a 100lb weight loss. I feel physically good. I walk, ride a bike, and weight lift regularly. I find this is important, because I can get so lost in everything I need to do for B. Andrew is better at taking time for himself. It is a skill I need to work at.

I still would like a decent and flexible job. Not working, beyond my own writing, and not contributing financially to our household is very hard on me. But I need a job that allows for appointments, and random time off, and that is not easy to find. I do what I can.

I will get back to posting more regularly, and keep you up to date on her treatments.My next goal is trying to get funding to buy this bike , because Lordy, I cannot take the heart attack of her trying to ride down the street, with her eyesight and hearing issues, a seizure happening at any random time.

Oh, yeah, she got a hearing aid.


  1. Have you tried contacting the Keppra Patient Assistance Program?

    1. Oh, it would be paid for. I just can't give it to her. I can't take ANY increase in her behaviour issues. And I can't take a chance of making them worse. It would be unconscionable.