March 11, 2012

lecrae tweets.

I follow the Christian rap artist, Lecrae on twitter. His powerfully, thought-provoking tweets often stop me in my tracks. Here are some of my favorite recent tweets:

-"If we aren't grateful what we already have, why do we constantly ask for more?"

-"Make plans today, but remember plans don't accomplish things, God does."

-"When your expenses are lower than your income, your stressing decreases. And when your car breaks down, you don't."

-"You can impress people from a distance, but if you want to impact them, get up close."

March 9, 2012

EEG results.

The short answer: Pin's brain is getting better but it is still abnormal. I bawled. Jeremy smiled.

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...

March 1, 2012

routine EEG.

We just walked in the door from a trip to Richmond, VA and Winston-Salem, NC. We had a great time house hunting in Richmond and hanging out with family in NC. No home purchase was made but I think we are really going to love living in the south. At the very least, the weather is amazing.

Tomorrow, Pin and I head down to Children's Memorial for a routine EEG. We requested she have one before we transition health care to doctors in VA and so we can have a new baseline. I am nervous but I don't think I need to be. This EEG is 4 to 6 hours long (thankfully NOT an overnight) and I know the routine so well....only this time I need to keep her little hands busy with toys instead of grabbing at all the cords on her head. Not a bad problem to have seeing her system is waking up more and more to the world around her. We are so grateful.

Pin's last EEG was in the beginning of August 2o11 right after our horrific summer of getting her spasms under control. We know this one will be much improved seeing she is on the least amount of medication ever and we are almost to the 8 month mark of no seizures. We again are SO grateful.

Will you pray tomorrow goes well?

We love you.

window seat.