This is a video of Raul swinging from last weekend. He loved the swing!
Sunday night we went to an informal party that my parents were having, but Raul insisted he wear one of his bow ties! He likes to dress up, and was upset when we tried to take it off at the end of the party!
Then yesterday Raul had his orthopedic appointment. The main thing we were looking to address was his ankle contractures. The doctor checked out his legs, and he is going to consult with some of his colleagues about his case. He thinks that his contractures are probably too tight for just serial casting to work, that it would likely take a minor surgical procedure. The reason to do this is so that he could bare weight on his legs, as he already has osteopenia and will likely get osteoporosis a lot sooner if he cannot put weight on his legs at least. We don't expect him to walk, this would just be for standing with assistance to strengthen his legs. He also ordered a DEXA scan, which is usually something done regularly for those with severe RDEB. The doctor is going to get back to me in a few weeks on what they think is the best option for him. It was disappointing that there isn't a straightforward solution, but I liked the doctor, and hopefully he will come up with a plan. The good news out of that appointment was that he now weighs 38.3 pounds! He had been at 36.5 for a long time, so some weight gain is great!