Thursday, December 17, 2009

Rafi 16 Month Update

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!

Tuesday, September 01, 2009

Rafi: 12 month update

Rafi celebrated his 1st birthday with family and friends this past month, and the event was truly special. After everything our little family has been through this year, the birthday was especially meaningful. It gave us the oppurtunity to thank many of those who helped us and continue to help us deal with our situation with Rafi, whether it be physical or emotional support. Additionally, the birthday gave us the impetus to reflect on this past year and how far developmentally Rafi has grown.

Rafi has now surpassed his need for a feeding tube, his last session with one being in mid-August (and will hopefully never need one again) and he can now stand and walk with great improvement. His babbling shows promise of his first words, hopefully to come soon (can't wait!). Additionally, he shows understanding of simple requests, ("Come to Ima!" or "Give that to me.") by actually following through! Rafi has also stopped receiving feeding therapy, and is now engaged in speech therapy alone, which he enjoys.

A lot has been going on with Rafi's medical situation as well. Just recently, Rafi underwent minor surgery to remove his feeding tube stomach button, which was successful (except that now he's being treated for an infection from the surgery--he should be totally fine within the next couple of weeks). He has also been seeing an audiologist at New York Eye and Ear who fit him for a Baha hearing aid (which is worn on a headband; no surgery required). It's tough to keep the Baha on his head, though, but with time Rafi should get used to wearing it.

Since the weather has been so nice, Rafi's been spending a lot of time pushing his car-walker around various neighborhood playgrounds, especially those with bonus sprinklers. It always surprises me when he suddenly walks away from his little car and ambles off on his own, but I guess I've got to used to seeing that.

All in all Rafi's come a long way and we continue to be so proud of him!

Thursday, June 25, 2009

Rafi: 10 Month Update

At 10 1/2 months, Rafi has made a lot of headway since the 8-month mark. His crawling has advanced to warp speed and he cruises furniture with ease. Rafi's latest feat is standing in place for about 20 seconds--maybe he'll even try walking soon! Some of his other "tricks" include waving bye-bye, clapping, and tossing his toys out of the tub while bathing.

Rafi has continued to grow so well physically that he was actually discharged from physical therapy, making his day-to-day schedule a lot easier to manage. He still receives feeding therapy, and his therapist will also soon incorporate speech therapy, but Rafi is making a lot of progress in his eating as well. Using a hand-held mesh "easy feeder," Rafi enjoys eating soft fruits on his own, and gets a lot of chewing practice. When I blend food for him, I can now make it a lot more textured than in previous months, and Rafi can handle it with marked improvement. He still receives his formula via feeding tube, but he's also getting better at drinking from a sippy cup, so hopefully we won't have to continue with the tube much past his first birthday. We also have an appointment with an audiologist at the New York Eye and Ear later in July, who will be fitting Rafi for a hearing aid in his right ear.

In terms of doctors' appointments, Rafi's schedule has become considerably lighter. After our "make-up" sleep study, which thankfully concluded that Rafi does not need any kind of ENT surgery at the moment, his appointments are at an all-time low. We did have a scare at the end of last month when his feeding button (port on his stomach) fell out (we were warned that could happen) and we had to take a late-night trip to the ER to get it replaced. After it fell out again the next afternoon, the doctor concluded that it was simply too small and placed a larger-sized one instead. Since then, we thankfully haven't had any trouble with it.

Since we're not spending too much quality time at doctors, Rafi has really expanded his recreational side. We've been to the weekly storytime sessions with other infants at our local library and also frequent the playgrounds. Rafi loves the swings, slides, crawling around and picking up foreign objects, and watching the older kids. Our building complex thankfully has a great playroom for rainy days and now that Rafi is a little older, he can appreciate many more toys. We also recently went to the Central Park Zoo and Rafi fearlessly pet the sheep and goats.

All in all, things are really improving for Rafi. He is just a regular baby, soon to be toddler, very inquisitive and curious, and getting his hands into anything they can reach. We are so grateful and fortunate for his progress and hope he will continue to grow and develop as well as he is now.

Wednesday, April 22, 2009

Rafi: 8-Month Update

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.

Monday, February 09, 2009

Rafi Update -- 6 Months Old

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.

Monday, January 05, 2009

Like Cutting One's Fingernails

One of more maligned films in the Jewish world in recent memory was Munich. Munich told the story of the aftermath of the massacre at the Munich Olympics. As everyone is well aware, Israel recruited a team of assassins to kill the members of the Black September who plotted the massacre. The movie takes a number of liberties with the facts and is designed to get across the moral difficulties inherent in such forms of retaliation.

At the end of the movie the protagonist Avner, no longer the cockeyed idealist at the start of the movie, poignantly asks his handler what was gained from killing these men; after all they were quickly replaced. To which his handler responds "why cut my fingernails? They'll only grow back."

That's what Israel is essentially doing in this war. Israel cannot wipe out Hamas. Right now there is no other group that is capable of controlling Gaza and Israel has no interest in returning to Gaza. But Hamas was getting too powerful and was shooting too many rockets into Israel. So Israel decided to weaken Hamas so it would have a short respite until the next round comes in a few years. These are the realities of the Middle East where conflicts do not lend themselves to easy solutions.

That said, I don't understand what Israel intends to gain by launching this ground incursion. The loss of life and suffering on both sides (but especially in Gaza) that resulted from the ground operation cannot be justified if the sole gain is to weaken Hamas. Hamas was already greatly weakened by Israel's aerial campaign, and it seems to me that the utility of the ground campaign is outweighed by the substantial human cost. But I guess other people could have a different calculus.

Thursday, January 01, 2009

Proportionality Revisited I

Just like during during the Second Lebanon War, much of the debate about Israel's conduct in this war revolves around whether Israel's strikes against Hamas are proportional. Generally left unexplained is: proportional to what? Additionally, the very idea of proportionality is difficult to understand. Why should a country respond in a manner that is proportional?

After my last post, in which I challenged opponents of Israel's decision to target Hamas to provide some realistic option, I've decided to lay out Israel's obligations in this war. In doing so, one must explicate the meaning of proportionality, which can only be done once the status of Palestinian civilians is clarified. I'll begin with the latter issue and show how proportionality is directly related to whether one believes Palestinian civilians are free targets:

Is There a Distinction Between Civilians and Combatants?

The civilian/combatant distinction has a long and venerable history. It goes back at least to the days of Hague Convention of 1907 and, at least in theory, has guided how Western countries have fought wars (of course theory is not reality). But what is the basis of the distinction?

We can conceptualize the distinction as follows: as a general rule people have the right to live. They should not killed arbitrary or indiscriminately; they only lose their right to live in certain circumstances. War is one of those circumstances. War is a suspension of the regular rules of daily life. War is a state of affairs when each party decides that trying to kill the other is preferable to the status quo.

While war has also been part of human nature for as long as human walked the Earth and outlawing war is essentially a fool's errand, we can make rules that limit the carnage. One such rule is to distinguish between people who are actively engaged in the fighting and those who remain on the sidelines. Those who engage in fighting (combatants) have chosen to forgo (for the most part) their right to life, while those who have chosen not to fight retain that right.

This distinction makes sense. It follows that someone who is actively trying to kill his neighbor bears the risk of his actions and give up his rights. By threatening his neighbor's life, he forfeits his usual protections. But someone who merely happens to live in the same country as those doing the fighting has not threatened his neighbor and accordingly preserves his rights.

How is this dichotomy relevant to Israel's war against Hamas? Essentially, unlike a normal country, Hamas does not have an army, and only has a military wing. Consequently, any member of its military wing, which includes its so-called police force, must be deemed a combatant and is fair game. Also important is that its military wing is inseparably fused to its political wing. As such, many, if not all, of its political members are combatants as well.

But Palestinians who are not members of Hamas are civilians (or combatants as members of other milatant groups such as Islamic Jihad). Those includepeople who support Hamas publicly or those who voted for Hamas. Given the very high exit costs in Gaza, civilians were faced with an election in 2005 between a corrupt Fatah and a belligerent Hamas, and the fact that most chose Hamas does not make them anymore combatants than the fact that a majority of Americans voted for Bush in 2004 makes them fair game because of the war in Iraq. While there is a fair degree of grey area here, support for combatants does not make one a combatant.

To keep this post short, I will deal with the proportionality issue in the next post.