So we finally got insurance approval for going to Cincinnati! Thankfully we were able to reschedule for September (which is actually pretty shocking). This is such a huge relief and we are very grateful to our Pediatrician's Office for sending out the 50 page fax for the appeal. And that it was enough for them to approve the appeal. So very grateful!
A few people have asked "Why Cincinnati" and I wanted to answer. Not only is Connor going to get checked out head to toe for Duchenne Muscular Dystrophy (and evaluated on how the Deflazacort is working which we are slightly concerned because all his veins are popping out now and he's been on it a year) but he is also getting a Cardiac MRI. This is important to us because we need a baseline to see if there has been any fibrosis in his heart yet. After this one, it will be every 2 years.
Cincinnati Children's Hospital takes a multidisciplinary approach. He sees up to 10 Doctors in 2 days but his primary Doctor there is Dr. Wong. She is a Neurologist and expert in DMD. She knows the latest trials, articles, etc. The MDA clinic at Dartmouth Hitchcock didn't know anything and had a "wait and see" approach. That is just plain unacceptable (I will say that there have been many people who have said their MDA clinic is amazing. This one just isn't.). He also has a TON of diagnostic testes like bone density, blood, liver, etc. They truly know what to evaluate.
Obviously Connor is still very mobile and LOVES to dance. Some things we have noticed more recently where he has more difficulty getting up from the floor and he seems to have more muscle soreness. The incredible thing is that he's able to tell us! The Applied Behavior Analysis therapy he has been getting since his Autism diagnosis has been wonderful. We went from uncontrollable meltdowns with seemingly no trigger to be able to see when he's getting overwhelmed. This summer was the first time that we weren't entirely home bound because of his unpredictability (providing we have a 1 to 1 adult to child ratio). :)
We also need to thank endlessly a generous anonymous donor for paying for our hotel for the trip for Connor to Cincinnati. It is just truly amazing. We will do updates during the trip but hope (and expect) it to be pretty standard.
