Monday, June 21, 2010

So embarrassed...

Didn't I say I would do better at the blog thing? Big liar. I don't even know how to explain the absence. We haven't been that busy. I think thats the problem. We've been hanging out with Brian and Tugger for a few weeks and the time just flies by.

Brian has been out of town last week and this week to a camp he has been helping with the past few summers. We missed him like crazy last week so Livi and I escaped Kansas City for a few days to be with him in Bolivar, but will be heading home Wednesday am. Because...

Thursday we meet with the neurologist and a dietitian. A lot of things will be happening during this office visit, I think. We will be meeting our new neurologist because the doctor we have now is transferring to the east coast for a job. We will also be meeting a dietitian to discuss all together the possibility of putting Livi on a special diet to help control her seizures. Its called ketogenic diet. Right now all of my free time is used up reading the unofficial book about it for parents so I can be prepared for the meeting. We upped her meds a few weeks ago and generally she is doing better--less seizures, but she is still sleeping ALOT as a side-effect of all of the meds she is on. The goal of the diet (which I will let you all read more about if you want on your own) is do obviously decrease the seizures and possibly also the medications (and therefore some of the side-effects of the meds, which, quite honestly are horrifying).

Last week I spoke with our neurologist that is leaving to have a clarifying conversation with him and to set up this next appt. He said a few things that stuck with me. 1. basically Livi is so totally unique that she is "as complicated as it gets". He specializes in complicated--so that means a lot. While this could have been discouraging, it was almost encouraging that we have accomplished so much with her medically so far. 2. Since she is so unique, the odds and statistics of meds, therapy, etc...basically don't apply to her. Its a free for all. 3. He is moving to a position that will be more focused on research and he thinks maybe in the future he will be possibly calling us for some "special task" or something--totally interesting.

As promised, here are a few pics. Since she has been sleeping a lot there are not many, but she is finally (after upping her meds) smiling again at Brian quite frequently for the first time in a few weeks. We are elated...oh, also, we play with new game where we stack up blocks on her tray and she knocks them down. So cute and she LOVES it! She knows what to do as soon as I start. Sometimes I don't even get them all stacked before she knocks them down. YAY Livi girl! mommy is so proud!

1 comment:

  1. she just looks like such a big girl! love to hear that she is knocking her blocks down. good girl!