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.
I read your blogs and am so impressed with the way you are handling all of this stress. My prayers are with you. Callie is a beautiful girl and she is so very lucky to have you as a mother.
What can I say but I’m in agreement with Deborah from the above comment. Will keep your family in prayer. You are a beautiful example of a life in submission to your Savior. I can see that your trust in HIM is far beyond what most of us ever experience. Thank you for this blog where we can be updated. MOMS will pray as a team for you, too.
Much love in HIM.
I think of all of you every day, and I mean that. You have a wonderful group of doctors and very outstanding facility to keep an eye on Callie. She is a beautiful child, and I can’t imagine the things you are going through to care for her, but am confident that you are indeed, none the less, becoming stronger with each day. I’m sure watching her cope is amazing, and I pray that all of you will continue to lean on God and Jesus who gave us the promise that ‘He would never leave us nor forsake us’. We don’t understand, but know that you are being held in the hand of God as you trust in His infinite plan for you.
We all anxiously await the day that you can post a new, wonderful breakthrough has been found for Callie and all affected by this disease. My prayers are with you as you face these long days at hospitals for testing and evaluations. With my child, those seemed to be the hardest days. Physically and emotionally, it was exhausting. I am so glad your husband was able to go with you. That always seemed to lighten my load a bit.
Our prayers continue for your family and Callie!!!
I’m really glad to know she is at Duke. When I was first diagnosed with my JDM, we were at MCG and then tried several other doctors until finally finding a doctor at Duke. It’s the first place where I felt like the doctor knew about the disease and current findings for the disease.
I am definitely going to continue to pray for Callie. I hope one day you do go and they have some sort of breakthrough treatment/cure.
Stephanie