Sunday, November 30, 2008


Here's Ben rolling out pie crust dough on Thanksgiving morning. What a hard worker!

Friday, November 28, 2008

It's raining, it's pouring....

We just got back from spending Thanksgiving with Neil's parents. My mother-in-law Hedy observed this gem yesterday morning: Ben was listening to his Peter Paul and Mommy CD while playing with toys. At one point, he started tapping his head. At first Hedy couldn't figure out why. Then, a second later, the lyric "bumped his head and he went to bed" came up!

See, the amazing thing about this is that even while he was distracted by other things and the music was in the background, he heard it well enough to recognize what song was playing and remember what lyrics came next!

No, we didn't teach him to do this. This was apparently his natural response to the song.

Thursday, November 27, 2008

How do you get a CI, anyway?

Well, first you have to be deaf. The FDA guidelines currently require that you have severe-to-profound bilateral sensorineural deafness, that you do not receive benefit from hearing aids, and that you're at least a year old. Well, phooey on them. The FDA guidelines are just that -- guidelines, and not legally binding.

Ben does indeed have severe-to-profound bilateral sensorineural deafness. The hearing loss classifications (mild, moderate, severe, profound) are determined by hearing thresholds, as given in decibels (dB). (Actually, they are given in dB HL, i.e. hearing loss decibels. Nobody has been able to give me a straight answer as to exactly what these are, and how they are related to the regular decibel system, which essentially tells you how loud a sound is. Specifically, the number of decibels is the logarithm of the power of the sound. But I digress.) For example, if you hear nothing below 90 dB, then you are profoundly deaf. This is all complicated by the fact that almost nobody has the same degree of loss over the entire frequency range. Typically, a person has better hearing at low frequencies than high ones. In his left (better) ear, Ben hears "low" frequencies (low for the purposes of speech perception, namely 500 Hz) at around 65 dB. Higher frequencies he doesn't hear until around 80-90 dB. So the hearing loss in his left ear is severe-to-profound. The loss in his right ear is profound.

The "sensorineural" part means that the hearing loss is due to problems in the inner ear, auditory nerve, or higher levels of auditory processing, as opposed to an obstruction or abnormality in the outer or middle ear. In Ben's case, the culprit is the hair cells in the cochlea.

Some people have a "reverse slope" hearing loss, meaning that they hear better at high frequencies. (Leah, if you're reading this, I'm thinking of Nolan here.)

The FDA used to require a profound hearing loss for CI candidacy. Then it was discovered that profoundly deaf people with CIs performed better than severely deaf people without them, and it seemed a bit unfair to deny the latter group the benefits of a CI. In fact, I think that people with CIs often perform better than people with moderate hearing losses; however, at that point, the benefits may not be substantial enough to warrant the costs and risks of surgery.

You need to undergo a trial period with hearing aids in order to demonstrate that you do not receive (sufficient) benefit from them. Ben was first fitted with aids back in January of 2008. After a couple of months, we were increasingly confident that he was getting some meaningful sound in his left ear, but it seemed like there wasn't much going on in the right. This was verified by a number of hearing tests in Buffalo and at the NYU Cochlear Implant Center, where we went for candidacy evaluation in June. We took advantage of the hearing in his left ear to pump as much sound and language into him as we could, and I think this early exposure has been very beneficial to him. But it was pretty clear that the amount and quality of sound that he was getting with the aids was insufficient for spoken language development over the long haul.

Another thing you need before CI surgery is a CT scan or MRI, to look for structural abnormalities that might complicate the surgery or render the implant ineffective. Ben had a CT scan in May.

Now, Ben was implanted at 8.5 months. Increasingly, CI surgeons are implanting before 12 months. Some implant centers still refuse to do this. One of the reasons that we travelled to New York City is that the NYU Center has done many implantations at less than 12 months. We are absolutely convinced that Ben's rapid and easy progress with hearing and language with the CI is largely due to his early implantation, and the extra four months of hearing this bought him at a crucial period of development.

Our insurance company was not so enthusiastic, though. After initially telling us over the phone that they had no minimum age requirement for CI surgery, they then refused to approve the procedure, on the basis that implantation before 12 months is still considered "experimental." We found this out a few days before we were supposed to head back to NYU for the surgery. Maybe I'll give the full story of our insurance battle in a future post, but the short version is that we launched an expedited appeal, our surgeon intervened on our behalf, and eventually we were approved. Our surgery date had to be pushed back a little over a week, but that and a boatload of stress were the only costs to us.

So Ben went in for CI surgery on Friday, July 11. The operation went beautifully and quickly. We spent one night in the hospital, and he was discharged around noon the next day. He recovered very quickly. The device was not activated until July 31, because the incision site needs to heal completely. I'll give a full account of activation another time. This post is already quite long enough!

Saturday, November 22, 2008

Blocks in Box

My mother got Ben a subscription to the magazine "Babybug," which Ben loves. The latest issue has a little story about Ned (a toddler) and his mother putting various things into boxes. Yesterday, Neil got out Ben's box of animals and also a bag of alphabet blocks. Ben was standing around pondering these things, and Neil idly commented, "Ned puts blocks in the red box," a direct quote from the Babybug story. Ben alerted to this, walked over to the magazine sitting on the coffee table, flipped through it until he found the story about Ned, and then held it up and showed it to Neil.

We introduced Ben to books very early on. We would hold him on our lap and flip through a board book, pointing to objects, sometimes reading some of the words. At first he didn't pay attention for long, and we didn't press the matter. But we continued to read books with him, modeling how to hold the book, how to turn the pages, etc. And by the time he was three or four months old, he loved books -- he would turn the pages himself, stare intently at the pictures, and follow along as we pointed to the words while reading. As he got older, books became a great way to introduce vocabulary to him, especially after his CI activation.

Wednesday, November 19, 2008

No More Monkeys....

Ben likes the book "Five Little Monkeys Jumping on the Bed." Often at mealtime or when he's going down for a nap, we'll recite some of the story to him, and here's what he does:

So five little monkeys jumped on the bed.
[starts tapping his head, in anticipation of...]
One fell off and bumped his head.
The Mama called the doctor, the doctor said
[starts wagging his finger as if to say...]
"No more monkeys jumping on the bed!"

Still working on that receptive vocabulary list. We're up to almost 200 words now!!!

Here's a cute anecdote from earlier this week: Ben was standing behind the sofa, where we keep his little rocking horse. He couldn't see me or the teddy bear that was on the sofa. I said, "Ben, can you get your big blue teddy bear and put it on the horse?" A second later, Ben marches out, looks around briefly, gets the bear, takes it back behind the sofa, and places it very precisely on the horse's back. (The intense gravity with which toddlers perform every task is just delicious!) Oh, did I mention that he's deaf?

Wednesday, November 12, 2008

Eine kleine (more) Ben-musick

Ben's favorite CD is "Peter Paul and Mommy" by Peter Paul and Mary. A couple of the tracks are live performances, and one has applause afterward. Ben always claps along. His favorite song right now is "I'm Being Swallowed by a Boa Constrictor" (lyrics by Shel Silverstein). As soon as it starts, Ben reaches down and touches his toes ("Oh no, oh no, he swallowed my toe, he swallowed my toe!").

My Aunt Kathy made me a cassette of this album when I was very young, so I grew up listening to it. I'm often very moved by the songs even now. I got a copy of the CD a few years ago, and when I was expecting Ben, I really looked forward to sharing it with him. ("And if you take my hand my son, all will be well when the day is done....") I remember playing the CD shortly after we found out he was deaf, and feeling devastated that he would never be able to listen to it. How utterly and completely wrong I was!!!

Monday, November 10, 2008

Music Appreciation!

This'll be quick -- I have to take over Ben-care in three minutes from my husband.

One of Ben's tricks is that when we start singing "When You're Happy And You Know It," he starts clapping his hands. One of his baby toys plays that melody (among many others). The sound quality is pretty poor -- rather tinny. Today Neil noticed that whenever the toy starts playing that song, Ben claps his hands -- and not for the other songs! So he's clearly recognizing the melody.

He has another toy (an octopus) that hangs off his high chair tray, and when you pull on it, it plays "Sailing, Sailing." When it's hanging off to the side, he can't see it. Sometimes when he's not paying attention to me, I'll reach down and pull on the octopus so it plays the song -- and he'll listen, and then look down and point at the octopus. This is even when the TV is on and there is other noise in the environment.

More on Ben and music another time ....

Wednesday, November 5, 2008

A couple of tidbits....

  1. Neil taught him this one: When we sing "Ba-ba-ba-ba-ba" (to the tune of "Shave and a haircut"), Ben responds with "Ba-ba!" It's too funny.
  2. Ben has a friend named Cal, who is about 6 months older. When you ask Cal, "What sound does a horse/cow make?" he makes the appropriate sound. So yesterday, when Ben was having fun making some growling noises, I asked, "What sound does the lion make?" (Coincidentally, we had a book opened to a page with a lion on it.) When he growled, I said, "Very good!" and he picked up on it. So now whenever we ask about the lion, he growls! (Thanks, Cal, for the inspiration!)

Monday, November 3, 2008


Here's Ben dressed as a pumpkin (what else?). Halloween was a lovely day here -- sunny and warm. We took Ben for a walk down the street so that he could see the trick-or-treaters (and also so that we could show him off to the neighbors, who descended on him with much ooohs and aaahs).

On Saturday we went to a birthday party for Ben's friend Jackson, who is just a couple of weeks younger. There was a good crowd of kids there, and Ben had a wonderful time. In fact, he did a great job of hearing and responding to our voices, even in a noisy environment, which was very encouraging! Jackson's parents put on a CD and everyone danced to the music. Ben loved that.

Ben is saying "Mama" and "Dadda" very clearly now, and he's working on "mo-mo" for "more". He's starting to repeat the sounds we make. For example, we were talking about the baby gate, and I said, "Ben talk -- ga-ga-ga-gate." He responded with "ga-ga-ga". He has an "n" babble that he likes to make that sounds like "neng-neng-neng". One of these days I'm going to compile a list of all of his receptive vocabulary. I've been keeping a hearing journal (on paper) ever since his CI was activated, and I have most of his vocabulary recorded there -- it's just a matter of getting it all onto one list. So look for that soon!