Wednesday, October 27, 2010

What ever happened to a free evening?

So....our lives are turning into a wild and crazy circus. I think that Thursday nights are our only evening where all of us are here togethor with no place to go.....although Keith won't be back until late tomorrow night so that counts this weeks family free night null and void :0).
It's ok when you just have to get kids to preschool/school/therapy during a week but now we've added dance class for the girls, Wednesday night church for Gid...Tuesday night therapy for me, and Wednesday nights I go to work on a quiet book I'm making for Christmas for Lucy with a seamstress who is generous enought to work with a not so great sew-person like me :0).
The therapy is an hour away....an hour there and an hour back....the sewing is from 700-1100pm. Crazy....anyway with Keith traveling a lot our lives seem fairly chaotic....and with the holiday season approaching I can't see much relief soon.
Lucy's appointment in Cincinnati went great. This doctor is the polar opposite to our one here. He is helpful, kind, asks questions, listens to our answers and wants to make sure we are satisfied with instructions and care before we leave. He explained several things to us that Dr Haseeb NEVER did...lik a siezure under 5 minutes doesn't cause brain damage...so we don't have to worry too much about those. Also....if a siezure does last more than 5 or if she gets several in one night...he gave us a suppository for Lucy to stop the seizures. It's $400 a syringe but since we have met our medical out of pocket this year...we're getting it free...along with Keith's vasectomy red0, Lucy's high tech more intense MRI scheduled, her 3 day hospital stay for Video EEG, all my therapy appointment and all of Lucy's and anything else medically that may come along in the next 2 months...WOO HOO!!
Anyway so we are feeling better about Lucy. We switched her medication. He was not happy that her personality was changing so much on the Keppra and that her siezures had returned on it. He stated that ...."we don't want her to live like that and we don't want you guys to have to live like that"....Finally a doc who hears us....so we are now on a new med....hopefully it will work and we can quit the Keppra and be done with this.
So that's what's happening....until next week :0)

1 comment:

Sarah said...

Thanks for the update. Still praying for your guys. Love you.

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