Yesterday was the 9 month mark for Ren. Everyday he is getting stronger and we are seeing improvements in his ability to swallow and protect his airway, reduced respiratory and heart rate, and increased interest and motivation to interact with his toys. Compared to a normal 9 month old, Ren is still incredibly weak and can not lift his arms to reach and grab for toys, but I built him a rig that suspends his arms and/or legs while he is in a sidelined position so that he can grab toys, work on pushing buttons, or kick his legs and play his kick piano with is feet. His physical therapist told me yesterday that he is doing an amazing job when she offers his support in his arms and is initiating movement when playing with toys. I would like to belive that the suspension rig is helping him gain strenth in his limbs and helping him understand that he is capable of moving, even though he isn’t used to it. Ren also finally got fitted (after 4 appts with one company, and 2 with a second one) with a helmet to help reshape his head into a nice round bowling ball. Due to his unusual amount of time spent on his sides, his head was getting flat on the sides, but wearing a helmet 23 hours a day for a few months should fix him right up. Fortunately, like most things, Ren accepted the helmet challenge with very little fight and almost seems to enjoy it. He also got his first set of hand splints to help encourage proper positioning of his thumbs.

Above all things, keeping Ren healthy and out of doctors’ offices and hospitals remains our number one priority and are happy to report that Ren continues to impress. We have recently been able to secure several nurses that are with us full time, and as a result, limit Ren’s exposure to anything that could cause him problems. Our life at home is really settling in to something sustainable that enables us to focus on his development and physical needs. On Monday, he will be fitted for a Tumbleform chair which will give us another tool to seat Ren in an upright position.These are the type of things that give Ren the best opportunity to develop and get stronger as he grows. This post seems much less eventful than any others in the past, so I suppose that is a good thing.