Thank you for being a GREAT doctor.

October 18, 2015

One of Reagan’s doctors is moving (waaahhhh!!) He’s Reagan’s neurologist, and one of our three favorite doctors; let me tell you why.

You’ve all heard about the things we were told by one of the other neurologists within the practice: “You need to make her comfortable, she won’t do anything, she won’t walk, she may not learn, she probably will only say a few simple words.”

Those are hard things to swallow. But the neurologist who Reagan saw regularly, he believed in her. Our first meeting after getting out of the hospital he told us that he would be aggressive in his recommendations, and it was up to us how aggressive we would want to be. He guided us with each medication he recommended to help control her movements and was honest, especially when he said: “Seizures won’t be your biggest concern, it will be her movement disorder. We need to try and get her movements under control.”

He had a plan to help.

I remember our first appointment right out of the hospital, I came in with a big tabbed binder with a section for each of her new specialists and red, teary eyes. He spent about 45 minutes explaining how the Basal Ganglia worked on a diagram. My head was spinning as he took the time to explain how the medications he was recommending would react in the brain.  He talked about the electricity of the brain, positive and negative charges, how two negatives equal a positive (is that right?). I don’t remember what he said because it barely made any sense to me.  What I gathered though was he was smart, and even though Reagan’s combined conditions were SO RARE, he had experience with metabolic patients and also with patients who had movement disorders.

We were in good hands.

basal ganglia diagram

The diagram Reagan’s neurologist presented us with during our first visit.

He didn’t pretend to know it all, because after all, Reagan was a baby and every medication we’d be trying, wouldn’t be FDA approved for babies, it would be scaled down for her size and weight. When I’d read a disclaimer about a medication, he would calm my fears.

He provided us with a glimmer of hope when we were so, so low, telling us that her brain could rewire itself and find other pathways to do the things the Basal Ganglia was supposed to do. And Reagan’s brain has rewired itself, some other part of her brain is helping her walk, not the Basal Ganglia.

Earlier this year we had an appointment during a string of tough days and he looked me in the eye and said, “You need to be more positive!” It hit me in the gut, but I needed it. He told me to only compare her to herself, not to other peers her age. “You compare her to how she was doing a month ago.” It’s a mantra that has stuck with us.

Reagan’s made such huge improvements since her neurologist came into our life and I’m glad he’s been able to see her have so much progress. Her movements are much more under control, she’s walking, eating and trying to communicate. On Friday we had our our last neurology appointment with him, and he said she looked fantastic and the best he’s ever seen her.

Rob and I always said the neurology appointments were the hardest ones, but he always made them better and they ended up getting easier.

We will miss you Dr. L. You are a fantastic neurologist and our family has been extremely blessed to have Reagan under your care. Best of luck in your newest endeavors.

Reagan selfie

Dr. L, Reagan and Mommy.

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