Thank G-d, Rafi is doing very well right now, and we couldn't be happier with his remarkable progress. He's meeting a lot of major developmental six-month milestones: eating solid foods (so far, pears are his favorite), outgrowing his baby bathtub, getting up on his hands and knees and creeping a little, grabbing and mouthing anything he can get his hands on, babbling, growing his first tooth and in general being alert and interested in everything going on around him. Rafi's personality is really starting to show, and he seems to be a happy, generally cheerful baby.
He still receives the majority of his food through a feeding tube, but if he continues to grow stronger in his oral eating habits, hopefully by the time he's a year old we can get rid of the tube and have him eating exclusively by mouth, which would be truly great. Rafi recently received a new feeding tube set, which makes the feedings a little easier to manage.
Rafi's still being closely followed by one of his surgeons, Dr. Warren, at NYU Plastic Surgery and Reconstruction, and we consult with him about once a month about his upcoming jaw surgery. Dr. Warren sends us on tests to keep up with the situation, and our most recent one was an overnight sleep study this past Saturday night to monitor Rafi's sleep apnea. All I can say is that if you ever have to do a sleep study, don't do it Cornell Hospital (with or without a baby). That had to be one of the worst nights of my entire life. They were entirely unprepared for the baby, although I had clearly made the appointment for him, and did not even provide us with a crib. Suffice it to say that Rafi and I (and Nephtuli, who had to pick us up fairly early in the morning from the hospital) went back to sleep the minute we got back to the apartment Sunday morning. For our next study, we'll return to the sleep facility where we went the first time, and had a much better experience. We'll have the results next week, and we're hopeful that his apnea has improved since he's been a couple of months old.
Rafi also receives help, four times a week, from a couple of Early Intervention therapists for feeding and physical therapy. Both therapists come to the house (Thank G-d) and are great to work with. They're confident that Rafi will continue to meet his milestones and are pleased with his success. He still has some progress to make, and they're working hard to help him meet more goals.
We're also monitoring Rafi's (repaired) heart condition at Columbia, (where he had his heart surgery), and thankfully, his heart looks good and strong. There were some side effects from the surgery, but nothing that is too difficult to manage at this point. The blood clot that was seen initially turned out to be benign, so that was good news.
We also had good news from his audiologist--underneath it all, his closed-off right ear is completely functional. So, once his surgeons give him a new ear, he'll have two, fully-working ears. In the meantime, he can barely hear out of his right ear, but since his left ear is fine, he should be able to learn language as well as anyone else. Starting at about a year old, until his ear surgery, (about 6-7 years old), he'll have a hearing aid to help him localize sounds.
His upcoming jaw surgery is a little complicated: he would have already had it, since it causes lots of problems, such as sleep apnea, smaller airway, feeding tube, but Rafi is missing a key jaw bone needed to complete the surgery. Therefore, Dr. Warren is waiting until Rafi is a little older so that his baby bones will continue to harden and become available for a bone graft procedure. This will require at least two surgeries (one for the graft and jaw surgery) and we still don't know exactly when the surgeries will get started. If his condition c"v deteriorates, then Dr. Warren will be forced to do something extreme (a tracheotomy) which we, of course, do not want to happen, but thankfully, it does not seem that we will have to resort to such drastic measures at the moment.
At home, Rafi enjoys his playmat, toys and Exersaucer and is a bundle of energy. Thank goodness he still takes regular naps and sleeps pretty late in the morning (averaging about 9:15 AM) so I have some time to recharge and get things done around the house. We adore our little boy and continue to be thankful to so many people who have helped, and continue to help us along the way.
