March 9, 2012
The long answer: We met with Pin's amazing neurologist this morning. He spent 1.5 hours with us. He is kind, gentle, wise beyond his years and full of hope for us and Pin. Her EEG is still abnormal but it IS improving. I was so disappointed, Jer was so happy (how can men and women be so different?).
I am disappointed because I WANT a daughter with normal brain activity. I work so hard with her and am seeing progress but it is slow. She will be TWO next month and still not independently sitting. She is 100% dependent on me and frankly, it is tiring. Very tiring. But, more than wearing me out, I want it for HER. I keep forgetting where we have come from...she used to have 20+ seizures a day and now, she hasn't had one since July 5, 2011. I have MUCH to be thankful for...but sometimes I forget.
Jeremy's response was based on the fact that we are seeing continued progress...moving slowly, but we ARE moving. He was not surprised by the abnormal EEG (maybe we should have talked about expectations before our appointment). He knows it takes a long time for an EEG to normalize....people can be displaying normal behavior for years and still have an abnormal EEG. He knows the best sign of brain function is the daughter in front of us- her eyes are brighter, her interest in the world around her is greater, her desire to crawl, to reach, grab, etc... is more of an accurate sign of the health of her brain. Maybe I need to listen to him more often. Maybe.
We are starting to wean her off her final medication tonight (it will take 2 months total) and are adding a low-dose of Kepra on Monday for good measure. Irritability/crankiness is the greatest side-effect and frankly, Pin could benefit from that. She is a ridiculously happy kid.
Thanks for reading this whole thing, and caring.
We love you...