Two Steps Forward, One Step Back

I'm pleased to announce that CJ's hearing aid is back and seems to be helping him tremendously. Actually, we got it right after the New Year, but I haven't been so great about blogging. (Look at me doing a great job at catching up, though!) He was so very excited to get it just in time for snow because he could wear it sledding and not have to worry about his cochlear implant flying off as he whisked through the air at speeds upwards of at least 2 miles per hour.

His teacher and Deaf ed. instructor as well as his speech teacher all report that he is much more accurate in his hearing with his aid on. This is GREAT news, and I'm so delighted to hear that he's finally doing better and has hearing on both sides. Well, we think he has hearing on both sides now. So, having the hearing aid in and functioning represents the two steps forward. We're always grateful for two steps forward, right?

It wouldn't be life if there weren't a little opposition, though, so we must prepare ourselves for one step back. We took CJ today to his audiologist to make sure his aid was programmed to the best possibility capabilities and to check on the status of his processor. While he was very compliant, they never did get to test the aid. The audiologist ran a test called NRT (Neural Response Telemetry), which checks each electrode in the implant to be sure it is functioning correctly. Here is a better explanation of how it all works.

We have done a few tests before and it appeared that some of the electrodes might not have been working, but attributed it to the fact that not all 22 electrodes fit into his damaged cochlea. This time, though, it became very clear that only TWO of his 18 possible electrodes are working. TWO!?!? This is definitely a big fat UH OH! The audiologist was going to be meeting with our doctor today to determine what to do next. The plan is more than likely to do a CT Scan of his cochlea to see exactly what is going on. That's the only 100% accurate way to be sure what is happening, but the suspicion is that tissue has grown over some of them or perhaps nerve endings have died...or something like that. If that's the case (which we have a sneaky feeling it is), our only option is to remove the current implant and re-implant him.

The baffling thing is that he passed his hearing test as if it was all working. We think there is a chance the other 16 electrodes haven't been working for a LOOOOONG time, and he has learned to compensate for that. I remember him telling me over and over that it didn't work, and I would adjust his processor for him and he would tell me thank you and walk away. Apparently that wasn't quite enough.

So, we've taken one step back...maybe. I hate that he may have to endure this surgery AGAIN and be retrained to use an implant, but I'm grateful that technology is there to help him in the first place. And, even with one step back, two steps forward is still positive progress. We always love positive progress, right?

One Small Step!! Yay!!!!

CLICK HERE TO SEE THE VIDEO

Liam had his first day of school this past Wednesday. He only goes Mondays and Wednesdays, but will eventually be bumped up to Fridays as well. I'm a little anxious to add the Fridays because I think he really needs the extra help. The more we can give him now, the better.

One thing they really worked on with him is keeping his hearing aids in. This is not a new problem. I've shared it lots of times in the past, but it has gotten much worse. He will not leave the blasted things alone for more than thirty seconds. When I went to pick him up, his audiologist mentioned that they'd had some success using a bonnet to keep the aids in his ears. (Apparently he wore the teachers out refusing to keep them in. Ummm...I guess I won't say I told you so.)

The bonnet reminded me that we have the hannah andersson pilot cap from last year. I knew right where it was, so I pulled it out for him. Voila! A good twenty minutes with the aids in. The really exciting part?! FOR THE FIRST TIME IN HIS LITTLE LIFE, HE TURNED WHEN I SAID HIS NAME!!! I didn't have to yell it, stomp on the floor, flash the lights, wave my hands, or stand on my head while sending him morse code smoke signals. He just turned.

The hat isn't quite the right size. He is able to get his naughty little fingers up in there and take out the aids, but some of my amazing friends are working on a cap that does the same thing, but is bigger to prevent him from attacking the aids. (Little stinker!)

Anyway, I made a video so the girls who are working on this project could see just what I meant. As you can see, he's doing great! He's so happy, and is finally trying to interact a little bit with us. You can also see that he's learned to clap for himself. This is a very new thing, and it's wonderful for him. He does something he thinks is good and then claps while looking to us for validation. If he made a good choice, we clap back. If not, he gets the "grumpy" look and a big NO. He hasn't quite figured out that it's negative feedback sometimes, but the fact that he wants any feedback from other humans at all is huge.

Live Speech Mapping

Big brother, Snort, helping entertain Little Guy.
The computer read-out. The white box represents speech sounds. We want the peaks (showing what he hears) to land within the white box.

Little Guy hanging out during the test.

Chewing the camera cord kept his hands busy and out of the way.

Deanna helped hold the receptor in just the right place for the test. Little Guy looks a little skeptical.

Little Guy loves playing with all the noise toys. This cochlear cowboy hat was his favorite.

A better view of the probe in his ear.

Michele watching the computer so she can use the data to correct his hearing aid programming.

Can you see the tiny wire there? Totally painless, but it does make him giggle with the tickly feeling it gives him.

Holding the receptor in place.

Little Guy can't have another ABR as frequently as we'd like because it's a huge undertaking to work around his breathing issues for the sedation. So, Michele uses live speech mapping to get an idea of how well his hearing aids are helping him.

She inserts tiny wires into his ear behind his hearing aid and then simply begins speaking or making sounds around him. The wires are attached to a computer, which provides us with a read-out of what he is hearing with his aids. From there, we are able to adjust his hearing aids accordingly. It is completely painless as you can see from the pictures, and it's a good alternative to frequent ABR testing.