A lot has happened since Rafi's 12 month birthday, especially in his eating development. As mentioned, Rafi no longer relies on a feeding tube for nourishment, but we still had to spoonfeed all his meals until just a couple of months ago. I'm proud to say that Rafi only now needs the occasional spoonfeeding and has since learned to eat food off his booster tray!
In terms of upcoming jaw surgeries, much has been postponed. As we found out at our last NYU conference that when Rafi was born, the surgeons believed that he would need to start those surgeries as early as possible (in Rafi's case when he would be 2 or 2 1/2 years old) due to his health conditions. However, since he is thankfully doing so well, the surgeons would much prefer to wait. The new surgery date is unknown, but will probably not be set until Rafi is about 4 or 5 years old. I had been hoping to get some of his surgeries over with next year, but it seems that it would be best to wait, and so that is what we'll do.
When Rafi is about 5 years old or so he will have additional surgeries concerning his hearing. He currently wears a BAHA hearing aid on a headband, and when he is older, the BAHA will be implanted in place. Also, any ear canal damage or underdevelopment will be resolved in multiple surgeries as well. Eventually he will have a new outer right ear and the ability to hear from it!
In other news, Rafi is doing very well developmentally. He is a healthy, active little boy who loves his toys, books, and whatever outdoor time we can get, weather permitting. Thankfully we have a great playroom in our apartment complex so Rafi can run around indoors (and now he's really running!) in the winter months. Rafi has yet to say any words, but his speech therapists are working on that. They have successfully taught Rafi a few signs, such as "bye-bye," "more," and "give me," which help Rafi communicate his needs.
We are so grateful for Rafi's progress and continue to be so proud of him!