Today Nathan, Callie and I spent the entire day at Duke. We met her neurologist, Dr. Edward Smith, for the first time. He was very kind and knowledgeable. However, I left his office feeling disappointed. I think I secretly wanted him to walk in and say, “You haven’t heard about this yet, but we’ve had a huge breakthrough and we think we can treat little Callie and see great results.” We’ll return to his office in six months for a check-up.
We then saw her pulmonologist, Dr. Richard Kravitz, who could be considered her primary specialist. Lung function is critical for children who have SMA because the chest muscles that help them breathe are weakened. Dr. Kravitz helps coordinate a lot of Callie’s care. She had lung tests that were fine and we’re working on some allergy problems she’s been having that have contributed to her increased congestion.
Callie also had an EKG (a tracing of the electricity in the heart) and an echocardiogram (an ultrasound of the heart). We got these tests because SMA impacts the autonomic nervous system, so we wanted to have a baseline test. Her EKG was normal and we haven’t heard officially about the echo, but we expect it to be normal as well.
We were also very pleased to learn that the nutritionist at Duke thinks that Callie is doing very well with her current diet. She gave me some good ideas about certain things to add to her diet, such as Pediasure. Callie has gained an appropriate amount of weight for a child with SMA since her visit to Duke in June, so we will definitely not be getting a feeding tube right now.
We saw the orthopedist on Wednesday and he said exactly what we expected him to–that it was nice to meet us and he would keep an eye on her spine. Scoliosis is inevitable but he doesn’t think we need a brace right now.
Thanks to Sandy, who took care of our 3 boys, in addition to her own 4 children.
We have 2 exciting fundraisers in the works right now and will post details about them on the site by Monday.