Sunday, January 24, 2010


How fitting that this is my 200th blog post, because the reason I started this blog was because of the new path in life this child:

had to take.

In November 2004 our daughter inexplicably began having seizures. At first we thought it was Epilepsy, but within a month we learned a new phrase: Rasmussen's Encephilitis. It was explained to us that somehow this disease had begun to destroy our perfectly healthy daughter's brain. Every seizure was an indication that part of her brain was disappearing - being eaten like pacman. We spent 3 weeks in the hospital between Thanksgiving and Christmas enduring seizures every 5 to 30 minutes. Eventually we were referred elsewhere.

We were lucky - we lived near the Medical College of GA, and Dr. Park and Dr. Lee were both available to see her, and both had experience with this rare disease. Dr. Lee has since moved on to TX., but at the time they saw her over Christmas to determine that yes she did actually have this incredibly rare disease. She underwent a brain biopsy, and it was determined that she needed a hemispherectomy. The right side of her brain was going to be disconnected to contain the disease. The consequences would be a left arm that would never really be able to be recovered well, a limp, and the left half of both eyes would no longer work - 90 degrees of vision loss. The only bright spot was that Dr. Lee wouldn't have to shave her blonde hair - he had a nurse that would braid it out of the way of the incision. It is difficult for others to understand the tears after surgery when we saw her body lying quietly. There wasn't a twitch, or a shake anymore, our daughter could finally sleep, and begin to get better.

Blondie actually celebrated her third birthday 5 days after surgery, and had very little interest in the procedings. She was very angry that we were making her sit up for so long, and definitely had not regained her personality at that point. Despite the extended family that made the trip down, Blondie had very little interest in the presents, and we were unwrapping them for days when she showed the slightest spark.

Over the last few years she has had hundreds of therapy appointments (now down to 2 OT and 2 PT per week). She began this process though as a newborn infant would. EVERY SINGLE muscle on the left side of her body had been turned off during the surgery. She began with swallowing, turning her head, holding it upright, sitting up, and eventually trying to stand. By the end of that first week she could sit for about an hour at a time.

Since that time, Blondie has learned to walk, run, hike, climb, dance, play tennis, attend girl scouts, attend regular school without any academic help. She continues to work hard to learn to read, can use her left hand to hold things, bugs her sisters, gets in trouble, laughs, plays games, and is as typical as expected. I'm still surprised that we frequently meet people who don't notice the difference in her compared to a "typical" kid even after a couple meetings. This kid has inspired our family to always do our best, but also has touched the lives of other families who have to go through this process as well.
Initially this blog was about her, but as our life has moved away from daily Rasmussen's/Rehab issues we have returned to just the typical mommy blog. Rasmussen's really sucks, but it isn't the end of the world, and our daughter is going to do great things and hopefully one day, show even more people the possibilities for people like her.
We are SO PROUD OF YOU girly. Thank you for showing us that being different is a wonderful thing.


Anonymous said...

Such a powerful post. It's great that you have been able to remember that your sweet girl is more than her condition.

Kelly said...

It is our goal every day that this doesn't define her... unfortunately it comes up a lot

Recovering Noah said...

Yay, Blondie!! What an amazing journey and recovery. You are SO inspiring.

Happy 5th Anniversary!

Leslie :-)

Jessie said...

Way to go Kid !!!!