Things are thankfully starting to pick up again, in fact so quickly that I’ll have to divide up all of the updates into a few separate posts.
Alex still doesn’t have his hearing aids yet, but we aren’t stressing out quite as much about it anymore because we learned a bit more about the timeline. If Alex is eligible for CIs, we’re going to go for it. The FDA, however, has a requirement that any potential CI candidate use hearing aids for six months to ensure that they can’t get any benefit prior to implantation. When we met with our ENT a few months back, he told us that the earliest he had implanted was nine months. We’ve done enough research to know the importance of getting implanted as early as possible, so given that, we want to shoot for that nine month mark as long as Alex’s age doesn’t increase the risk of the surgery. Of course, he’s four and a half months old right now, so even if he had his hearing aids today, the earliest he’d be able to get implanted would be ten and a half months, with actual activation (when the CIs are actually turned on) not happening for three to four weeks after THAT. I get that that extra month and a half probably doesn’t sound like that much time, but it’s literally forty-five more days of hearing experience that Alex would miss out on when his brain is trying to soak up as much as possible. There’s also the angle that we’d be twiddling our thumbs around during those 45 days while absolutely nothing happened. Shudder.
It turns out, however, that Alex’s profound hearing loss actually helps him out in this regard. We learned from Alex’s speech therapist (more to come on meeting her and Alex’s teacher of the deaf) that the six month time frame from the FDA can be easily petitioned, it isn’t hard-set, and it’s often shortened in cases such as Alex’s where it’s fairly obvious that hearing aids won’t get the job done. Phew. We’re still disappointed that Alex didn’t get his hearing aids earlier, but unless unless he isn’t eligible to receive them, cochlear implants are the end-game anyhow.
More on the hearing aids, though – we’ll (finally!) be receiving them in the next few weeks. The last holdup was getting approval from the Early Intervention program (so really, the county) to pay for them. He’ll need to get re-fitted since his last fitting was back in December and he’s a fast-growing baby, but we’re tackling that this week.
I have some mixed feelings on putting the hearing aids onto Alex. There’s a part of me that’s going to hate putting them on him the first time, because I think in some way his deafness will become all the more real. I’m naturally biased, but I think the kid’s adorable. It sucks to know that he’s going to have to wear these, and further down the road, the even bulkier CIs. The techy side of me immediately wants to step in and say “It’s temporary, no sweat!” which makes me feel slightly better about the long-game, but until we have that fully-internal tech or that biological fix, he’s going to have that apparatus visible. It’s not fair to him.
Overwhelmingly, though, I’m excited to get started. We don’t anticipate that Alex will suddenly be able to pick up on more sound than he is now, but we’ll be making progress. He’ll be getting used to having stuff on his ears, we’ll be getting used to him having stuff on his ears and chasing it down / replacing it / playing with the settings / charging batteries etc. It’s step one to bringing some sound into his world, and I completely embrace that.
More to come on his hearing aids, and I still need to write about our initial appointments with Alex’s teacher of the deaf and speech therapist.