Tuesday, May 3, 2011


We have been crisis and pertinent information free for the last week---thats why you haven't heard from us. We're enjoying the quiet. Literally nothing is going on. Last Friday we did have an awesome family day on one of the most beautiful days of the year. Unfortunately for Livi, it did not really include anything really fun for her. Unless she thinks Lowe's is fun. We do! Especially when we are picking out new bushes for the front yard after someone (thats me) got a little hasty and dug the really ugly dead ones that were in front of the yard out. And no, we have not actually planted any new ones. That might be a while considering the weather forecast for this weekend. Here are Livi and Brian in the Lowe's parking lot. Can't you tell she's loving it?

I also just got off the phone with her neurologist to talk about the tests they ran in St. Louis. We've already talked about the EEG, but her Dr. says its like her brain is in a fog all the time and we're just trying to clear it up. I didn't get the impression that we should hang on too closely to the infantile spasms diagnosis. She is really more growing out of that than anything and of course, as usual, Livi doesn't exactly fit into any category really well.

Livi's MRI did show some "pretty mild" atrophy--or loss of brain tissue. It could have been there before...it could be due to her heart condition...it could be causing the seizures...it could be effects of the seizures. It just shows that her brain is under stress and the information it gives us does not help with with a diagnosis except that it rules a lot of very bad diagnosis by the lack of severe atrophy. Its "not severe and non-specific".  So, we are just plugging away with the new medicine and trying to keep track of how exactly she is doing on it.

Reflecting on being a mother this week. Might let you know how thats going later on...

1 comment:

  1. can't wait to read these reflections.

    glad ya'll have had a slow week...it's about time!