Sunday, September 6, 2009

Reality check

Reagan was a little more feisty today, more talkative but also more whiny. Still no crying fits, so I'm happy about that. Seizures, well I'm not happy about those. Still yuck. I'm going to decrease her pm dose of Clobazam tonight so she'll be on 1/2 tab 3x day. Then maybe we'll start up the Banzel tomorrow or Tuesday. It's so hard to make these decisions but she definitely needs some relief from these seizures. Mornings are just the worst! Very twitchy. Hopefully the Banzel with help with all of the seizure rypes she's having right now. Tonight we ventured across the street and met some of our new neighbors that were having an early labor day party (they had put an invitation in our mailbox). I'm still amazed at how nice the people on our street much better than our old neighborhood! Reagan was well behaved, we took her over in her new stroller and she was content in it the whole time we were there. It's still a little awkward meeting new people and having to go through Reagan's laundry list of problems everytime. We usually try to say the least amount possible but then come the questions...Is she asleep? Do you want to give her something to eat? Do you want to let her out of the stroller? Why yes, yes I do! Most people that see her think she's normal (or typical) at first glance. And then of course we feel like Debbie Downers for going into detail about the real situation. Oh well, it is what it is. It's our new normal. Filled with doctors visits, therapy sessions, and an endless list of medications. I hope and pray that things get better for our little one, but for now this is our reality.


blogzilly said...

Great to know that the new neighbors are good folk. It is weird to explain any aspects of your child's life in these circumstances to newbies, always feels a bit awkward and strange to me.

Karen Owens said...

I often feel the same way (debbie downer) when people make the comment "He looks so good." Sometime I want to just scream at them that he is far from good!

I don't know why but that statement really bugs me. I guess sometimes I just want people to acknowledge our reality, not for pity but just acceptance.

DO you ever feel that way -- just curious?

Am I the only crazy one out there?