I was telling Shannon the other day about how weird it feels to NOT be writing that much about what’s going on with Alex now that he has his implants, because you’d think that this is really when most of the cool updates would be. When we first started walking down this path less than a year ago, I read more than a few blogs about the topic and noticed the same sort of thing; lots of updates leading up to surgery, a few after, and then the updates just sort of trailed off or became much less frequent. I had guessed that most of that was because progress would just be a gradual slope without way too many specific things to write about that would prompt those “I’ve gotta write about this!” moments, and that the other influencer might just be that things normalized for those people.
Well, I’m not sure if I can speak for those other bloggers, but I can say that the above is the case for me. Alex has been doing great with his implants. They weren’t that difficult to manage when he first got them, especially after we started using the headband, but now it seems like it’s gotten even a little easier. We’re experts in getting his magnets and headband back on when it falls off or he tears them off (which, thankfully, is still relatively rare), so the equipment remains not a big deal. I’m still sensitive to the people staring thing, but I also know that I’m not looking for people looking as much. So that’s gotten easier.
Most importantly, though, is that we’re getting real results already. Alex has been activated for less than two months, but he’s already CONSISTENTLY responding to his name, and he’s made it clear that he gets that certain sounds are associated with certain things in real life. We can now say “up up up” to Alex without any other visual cues, and he’ll often raise up the toy in his hands, just like we do in therapy. That’s pretty substantial. Additionally, he’s starting to play with his voice a little more. It’s tough to say at this point that when he says his “aaaaah” after we say “Ball, Alex!” that he’s trying to specifically say that, but those moments are happening more and more frequently. Alex’s teacher of the deaf saw him do that during his last therapy and thought it wasn’t coincidence. I’ll trust the professional opinion there.
He’s doing well. He’s doing really well, actually. I wouldn’t have dared hope that Alex would understand his name and turn to it in anything less than four months, never mind six weeks. He’s definitely vocalizing more (I just heard him do it in the other room), but at this point they’re mostly still “ooooh”s and “aaaaaah”s. But there’s new stuff sneaking its way in there. I have a feeling we aren’t way too far away from babble.
Shannon already wrote a great blog on our last visit to the audiologist, but Alex is already qualifying as only having a mild hearing loss with his CIs. That’s only going to improve, and the fact that he’s hearing at that 30db level implies that he’s already hearing all of the major speech sounds, which in turn implies (but isn’t guaranteed!) that his chances of having a speech affect will be reduced.
Anyhow, bringing it back to the whole blog-trailing-off thing, I get it, because now a lot of the fear is dissipating. Getting results like these so early on is encouraging to the point of being emboldening enough to start thinking that, huh, maybe everything is gonna be just fine, because he’s on the path, his trajectory is great, and our lives aren’t ruined or revolving solely around his hearing loss. Dare I say things ALMOST feel normal, and do-able.
A line that you read a lot in some of the more spirited cochlear implant discussions is that cochlear implant devices aren’t miracle devices, and they’re not a cure. Well, bullshit – at least to the first part. What we’re already seeing feels miraculous, even if I understand the basic underpinnings of the technology and biology that allow it all to happen. That’s all the clinical side of things. On the human side, I can call my deaf son’s name and he’ll turn and look at me and smile after only a few weeks’ worth of practice. He’s been doing this for a few weeks now, but I still call him just to make sure it’s for real and to feel that overwhelming sense of “Yup. He’s doing it.”
As for the second part about CIs not being a cure, that line of thinking is right, but more so on the clinical side than the human side again. CIs have cured Alex’s inability to respond to his name or hear our voices. (Speaking of voices, it’s becoming increasingly clear that he can distinguish between my voice and Shannon’s voice.) He’s been cured of his inability to not enjoy music, because judging by the way he bobs around when there’s music playing, he’s having fun. He might not be able to hear all of the nuances of the different instruments or of the harmonies, but maybe that doesn’t matter. I can’t see in infrared, but I don’t feel like my eyesight is worthless when I’m looking at the trees changing color with the autumn. And as always, I’m certain that these things are going to be unlocked for Alex over the coming years so that when the real cure DOES come and there are no more compromises to be made, he’ll have a solid foundation to build on. Every day we move forward the strength of that foundation becomes increasingly evident through his reactions to sound, the feedback we get through our therapists, and the reactions we see on his audiograms. He’s not cured, but the detriments to his hearing loss are being chipped away at.
That’s generally how I’m feeling right now, though I’ll emphasize that I know that these early indications aren’t going to guarantee results as we keep going down this path and that we still have many years of hard work and challenges we haven’t yet faced coming up.
I’ll give a more concrete update about what’s going on with therapies later.