Rafi is now about 8 and a half months old and continues to be one resourceful little boy. After a long while of experimenting with variations, Rafi has finally learned how to crawl! He's also pulling up on furniture, cruising a little, and can now lower himself back to the ground a lot more gracefully than when he first started. Babyproofing has turned out to be a work-in-progress since it's sometimes tough to figure out what he can and cannot get himself into, but we adjust his space accordingly.
In terms of speech, Rafi's recently added "ma-ma" to his vocabulary of random yells and croaking sounds. He'll undoubtedly need speech therapy because of his irregular jaw, but it's good to know that he's motivated to try new sounds.
Feeding Rafi has always been an issue, and the feeding tube will remain his main source of nutrition until he's about a year old. It's sometimes tough to feed an energetic baby who technically doesn't have to sit still to eat (although it would certainly make the process easier for me!), but thank goodness for distracting PBS shows. On Shabbos and Yomtov, reading to him while he's eating is generally enough of a distraction. Rafi loves to hear his books while eating solid foods, which he eats pretty well, although we're still in the stage 1, super-pureed foods, and have to hold off on finger foods. He can drink pretty well from a regular cup, (if I hold it while he's drinking), which is also promising for eventually dropping the feeding tube. Just a short while ago, Rafi actually held and drank from a cup of water all by himself (except that he was in the bathtub at the time, ewww!).
I still take Rafi to lots of doctors' appointments and other tests, and we recently saw his dentist, cardiologist, pediatrician, one of his surgeons, and ENT. Everyone was pleased with Rafi's tests, besides for the ENT. He did not like the results of the last sleep study (some numbers had improved, while others had not) and asked us to retake the test. We'll be going to the site of our first sleep study (definitely not Cornell) this Sunday night, and hopefully the poor results were just the result of a poorly done test. If the results are the same however, then the ENT said that the NYU team would have to discuss surgery options. This is, of course, disappointing, when everything else seems to be ok, but we'll have to wait a bit and see what happens.
Otherwise, Rafi is doing so, so well. His Early Intervention therapists are happy with his progress, and so are we.