January 11, 2008 - Tone Management Clinic

Well, today, we had Brianna's appointment at the CDRC tone management clinic. We walked away with an added characteristic to her CP and a prescription for Baclofen.

So here's how our day shaped up. At 6:00am, my alarm went off. I got up, got ready, and decided to snuggle up on the couch until 6:30am. At 6:30am, my alarm went off again. I scooped Brianna out of bed, changed her diaper, and opened the door to find the medical transport waiting. Rode up to Portland, slept on the way. I was exhausted. We arrived in Portland at 8:10 for our 8:45 appointment, and got in a room almost immediately. Brianna was weighed, and had gained about 10 ounces since last weight check. We had about a 15 minute wait before the evaluating physical therapist came into the room to do her exam. Dr. Kao, the attending, was running a little late.

Brianna was in a rather cheery mood, showing off her attempted crawling skills, not fighting against the evaluation, and happily pooping away, dirtying two diapers while we waited for Dr. Kao. When Dr. Kao came in, she asked some questions, conferred with the PT, and we discussed our options regarding Baclofen, determining that it might benefit Brianna. Dr, Kao also made the determination that Brianna is exhibiting signs of dystonia, rather than spasticity, which basically means her basal ganglia is more affected than her cerebral cortex. Which, according to Dr. Kao offers a little more optimism in regards to her abilities to communicate. Which is a really good thing. Communication has been a big concern for me. Will she ever be able to talk? Sign? Any sort of communcation beyond basic scan and select abilities?

Another factor to figure into the whole dystonia issue is the Baclofen issue. According to Dr. Kao, many children with dystonic tendencies tend to benefit from the Baclofen pump, rather than the oral dose. So we'll see how things go. See if Brianna benefits from the oral dose. Of course, we are starting out with a small dose and, if necessary, will continue to increase it, after the first week, until we either notice improvements or side effects (sleepiness). So, basically, that's our day in a nutshell. After the appointment, I was feeling pretty crummy. We came home, I ate, and then I crashed on the couch for a cat nap. I'm feeling a little better now, though a bit exhausted. Hopefully tomorrow is a better day.