The Coppit Family Daily News

We just got back from three days in Madison, WI. We were there to help Tina Greico with her research studying young kids with bilateral cochlear implants. Christopher was played different sounds, and she would look to see which direction he would look (left or right), which would tell her which side he thought the sound was coming from. Unfortunately Christopher was pretty non-responsive. I’m guessing that he’s just too young… He’s only heard with 2 ears for 6 months.

She also had Christopher do another study where he would listen to some made-up word and look at a made-up shape. After seeing the word and shape a lot, they would then show him the shape and say the wrong word. Here they were trying to see if he learned the new word or not, based on his response to the wrong word. He did pretty well on this study, since he is very good at focusing on pictures.

Overall we weren’t that impressed with Madison. It’s a university town, but seemed kinda run-down and yucky. The main drag, State Street, had a lot of ethnic restaurants, and the capitol building was nice. We also got down to the university terrace to listen to some live bands. It was kinda odd to leave Virginia to hear bluegrass, though. One other observation: folks in Wisconsin love their beer and brats—I think I gained 2 lbs in two days eating everything under the sun.

Dorothy and I decided to make Christopher’s next birthday a big one, since he’s more likely to remember it. This year the theme was to do all his favorite things: breakfast at IHOP in the morning, followed by looking at the animals at the pet store, then a nap, then a birthday party in the afternoon and Busch Gardens in the evening.

He now says “hap-day” for “happy birthday” when he sees a cake or someone wearing a party hat.

Dorothy and Christopher joined me in Minneapolis, MN. During the days I attended ICSE, while they went off to visit the Mill Museum, the Mall of America, and other attractions. Overall it was a nice, clean city to visit, at least during the spring. I’m guessing there’s a really good reason that the downtown buildings are all connected to each other by walkways.

Amber Gardner at UVa was nice enough to go ahead and upgrade Christopher’s software to the Fidelity 120 strategy recently released by Advanced Bionics. This strategy emulates 120 virtual channels on 12 physical electrodes by modulating the voltage between two adjacent electrodes. The quality is supposed to be a lot better, especially for music.

It’s great that we’re able to get the upgrade now. This means that he’ll have the new processing strategy for 2 months before we participate in a study in Madison, WI. Tina Grieco there is studying the language acquisition of kids with one versus two implants.

Lately Christopher has been amazing us with his understanding of abstractions. Dorothy showed him a puzzle piece that showed just the eyes and forehead of a horse, and he said “neigh”. Yesterday they were drawing circles on a page and he said “ball”.

I guess this is the first step toward being amazed by your kids.

Christopher’s incision from his second CI surgery still hasn’t full healed, even after 6 weeks. So we went to our local ear-nose-throat doctor, Dr. Stonebreaker. As we were leaving, Christopher said “Bah-bah” to the Dr’s assistant.

At first we weren’t sure if he “meant it,” but after we said “bye-bye” he said it again. Then, since I drove separately from Dorothy and Christopher, he said it over and over in the parking lot.

We took Christopher to a couple fun places around Charlottesville in the days preceding his surgery. One was Safari Zoo:

I think he liked the animals coming up to the car. As you can tell from the videos, Daniel was having flashbacks to a bad giraffe incident when he was a kid.

We also hit Carter’s Mountain for some apple picking. Christopher didn’t seem to be fazed by the pulling of edible fruit from trees.

Yesterday Christopher went through his second CI surgery. The pre-op routine was pretty much the same as before, but this time the anesthesiologist gave him some happy juice before they took him away. That was pretty funny… Christopher’s eyes were half closed and he had a dopey grin on his face. It’s not every day that you see your kid drunk as a skunk.

It turns out that Advanced Bionics had a representative in the OR for his surgery. Apparently they redesigned the electrode array so that it curls more, causing it to hug the inner part of the cochlea more. In theory this would allow the electrodes to more directly stimulate the auditory nerve, but they said that they haven’t seen a big difference in trials.

Anyway, afterwards we chatted with the representative, mostly because we wanted to hassle her about when the Auria was going to come out. We’re kinda tired of the body-worn processor, and can’t use the behind-the-ear model if we want to be able to trade it in for the new one when it comes out.

Bad to the surgery: Christopher’s recovery was pretty much the same as before. Today he’s been very wobbly on his feet, more than I remember before. The good news is that this time he isn’t messing with his bandage, so maybe we can keep the cup on for a full two days.

Here are some photos:

It’s been a little over a month since Christopher’s activation, and he’s starting to respond some to sounds. When we call his name, about half the time he’ll look around for us. He can also hear (but not see) me doing “raspberries” and do them himself. A couple of days ago I took him for a walk, and the ice cream truck was coming up behind us. He heard the annoying music and turned to see what was coming.
Some day we’ll take it for granted, but for now we’re excited every time he provides definitive proof that he’s hearing.

On Monday our son Christopher had his CI activated at the University of Virginia. He was 13 months to the day. We went with the Advanced Bionics device with the BWP. He was really tired on Monday, so we didn’t get really good behavioral indications that he was hearing (except that when the audi turned up the volume he cried).

On Tuesday we went back in for a checkup and increasing of the mapping volume. This time he had a really good nap beforehand, and was quite happy. The audi got him to look up a couple times while he was playing when she sent a tone to his implant.

There’s also a test where one electrode in the implant array acts as a detector, and the other as an actuator. This way the device can measure itself at the point of contact with the auditory nerve. This is really cool, and something I didn’t know they could do. In any case, Christopher’s response curves were textbook-perfect.

Christopher mostly ignores the implant, which is good because we were worried that he’d mess with it. Unfortunately, he also ignores any sound that he gets from it. Hopefully as he explores the world he’ll begin to understand that things have sound. We’re trying to train him to respond to sound, and I guess that will come in due course.

Here’s what Christopher looks like wearing his harness with the processor in it:

Here’s the whole photo album, which includes movies of him responding to sounds as the audiologist tests him:

Yesterday Christopher had his cochlear implant surgery. The short story is that it went really well.

We drove to Charlottesville on Wednesday to have our pre-op meeting with the surgeon, Dr. Hashasaki. Afterwards we stayed at Dorothy’s parents house. Christopher did pretty well with not being able to eat the day of the surgery… better than he did before when he had to go under anesthesia for the CT scan.

The morning of the operation, we dressed Christopher in his gown, and met with the nurses, anesthesiologist, and Dr. H.’s resident doctors. Overall we were impressed that there wasn’t much waiting around. By 11:00 they took him for the 11:30 surgery.

We waited until about 3:00, and Dr. Hashasaki gave us a call in the waiting lounge. He reported that the surgery went well, and that it only took 2 hours. Unfortunately, Christopher has so much baby fat that it took them a long time to get an IV into him. The good news is that they had him on gas so that he was knocked out and didn’t have to feel them poking him like a pincushion.

He also said that they tested the device in the operating room, and the Christopher’s brain was responding to the signals given to the implant. (We can’t really say that he could “hear sounds”, since they gave him electrical stimulation, and he was unconscious.)

We then went to the recovery room to sit with Christopher as he woke up. We wasn’t hardly a happy camper. He was swollen from the IV fluids they gave him, and woozy from being under the anesthesia. After about two hours we finally got our prescriptions and paperwork and were discharged.

On the way home he mostly slept, but he did wake up around Williamsburg. He was pretty groggy but I did get a little giggle from him. He pretty quickly found out that he had a headband and ear cup on. He slept most of the night, waking up around 6:30 this morning.

Today he’s still a little swollen looking in the face, but seems to feel just fine. His balance is a little shaky, but he’s still walking around a little. But as he woke up this morning he definitely didn’t want to have anything on his head. We ended up taking off the head gear, which Dr. H. said would be okay.

His incision looks clean. Apparently the stitches are inside… How they keep the outside of the skin together is a mystery to me… (glue?) The site of the surgery is a little swollen, and I think I can see where the magnet is under the skin. This is all good–I heard from some parents that their kid’s face is bruised, and their eyes swollen shut. Christopher just looks like Rocky Balboa the day after a fight.

Here are some pictures. WARNING: the last few are of the surgery site.

So the bionic baby is doing great!

Christopher lately has been taking a few steps on his own. This usually ends with him going into a crawl, but at least he’s trying. He can stand on his own pretty well now.

After the penny-swallowing incident, you’d think that I would be in the bad parent doghouse. I was, but it was short-lived. Check out this photo:

Look carefully at Christopher in the background. It looks like he’s eating something. It turns out it was a cigarette! He is biting off the ashes–yuk. So any time Dorothy brings up the penny, I can bring up the cigarette.

Check out this x-ray:

Dorothy says it’s proof that I’m not careful enough with him. In my defense, when he was chewing I did retrieve a little plastic label. Tricksie boy must have had more than one thing in his cheeks. Besides, the fact that the doctor said just to wait a day or so and it will pass vindicates my position that kids are pretty tough.

Okay, the new surgery date for Christopher is June 21st, three days after his birthday. It’s only a few weeks after the original date, but the delay really sucks. Lately he’s been waving to us a lot, so clearly he’s ready to communicate…

Well, we found out the cause of Christopher’s deafness today. It seems that he has the so-called “Connexin 26″ cause. Actually, he inherited two recessive mutations from us.

Click the “more” link for the full report. On the one hand this news is comforting in that we now know the cause, and it wasn’t because we anything we did. It also means that our future kids are more likely to be deaf as well, although I don’t know how much more likely. So, if you’re related to either me or Dorothy, answer “yes” to the question about a family history of deafness.

(more…)

Anthem of Virginia has denied our request to have Christopher’s operation done 3 weeks shy of his first birthday. I suppose it’s because the FDA recommends cochlear implant surgery as 12 months of age.

Oh well… The surgeon’s assistant said they would try to work us in the day after his 1 year birthday.

Here’s a super-cute video of Christopher. I took it in the hotel room during my recent trip to Delaware. Christopher is in a playpen for the night, but he’s obviously not ready to go to sleep just yet.

Dr. Hashasaki called to say that Christopher’s cochlea are shaped correctly, so that won’t be a problem for surgery. I mentioned to him that we would love to get Christopher in for surgery in April… We’ll see if that happens…

We went back to UVa yesterday for a final set of tests before his surgery. Our friends David and Rebecca were kind enough to let us stay with them the night before. It was a real pain since we weren’t allowed to give Christopher any food after midnight, or any liquids after 6am. The reason is that they were going to put him under general anesthetic.

There were two planned procedures: a CT scan to check the structure of his inner ear, and a test to see which of his auditory nerves responds the best to electrical stimulation. Unfortunately, the machine for the latter test was not working, so they said they would do it on the day of surgery. We also asked them to draw blood for a genetic test to see if that’s the cause of his hearing loss.

Anyway, back to our day: we got there pretty early, but it was another couple of hours wait before they could finally begin the procedure. Apparently there was a holdup in anesthesiology. When they finally got us in, they had Dorothy hold him as they put the nitrous oxide on him. Once he was out, they hustled us out of the room while they did the scan.

We waited in the waiting room for a while. Then Dorothy heard a baby’s cry and said, “I think that’s him!” She jumped up and checked, and sure enough it was. The scan only took a couple of minutes (basically they sedate him so that he won’t move around too much). Drawing blood took longer, even though he wasn’t wriggling.

Being the bad parents we are, we didn’t have a bottle ready for him. In fact, we didn’t have any formula mix. So we ended up mixing some apple baby food with water. Sigh… Next time we’ll be more prepared.

We still need to go back to UVa one more time to look at different CIs and make a final choice. But we’re leaning toward the Advanced Bionics device. One last thing-we set a day for the operation: May 23rd. They wanted to do it earlier, but we’re going to be out of town for Josh and Gabrielle’s college graduations.