One year



















Not proofreading.

Six Months











21 Weeks In

Another big lapse, even though a lot has happened. I had to go back and read my last entry just to see where I left off.

The big one is that Alex has started school, and so far, so good. The first two weeks we dropped him off and picked him up, primarily because the bus service was messed up in one way or another for the first two weeks. Shannon stayed with him the first day, and I stayed with him the second.

From what I saw, I think school is going to be extremely beneficial to Alex. Every activity they do is catered toward encouraging speech and listening skills, and they’re even teaching some more basic skills like how to eat with a spoon. There’s only six kids in his room and usually two teachers in there with him, so he still gets plenty of attention. They have a pretty huge gym area that’s full of mats, stairs, little tricycles, etc. They spend a little time down there every day. They also have music therapy classes that he’s clearly into. Kid loves to “dance,” which still means moving his head from side to side with a big grin on his face.

I’ll dive into detail at some point, but I’m pretty happy with school overall. The one issue at this point is that he’s at the age where his stranger anxiety is pretty hardcore, and so when I dropped him off it would generally suck because he’d be crying and reaching for me. It’s typical kid stuff, but I can’t help but feel guilty that he thinks I’m abandoning or offloading him somehow, which in turn stirs up anger that he has to even do any of this in the first place. The teachers are awesome, though, and they’ll text me and say he’s doing fine and participating. It’ll get better, but it sucks.

While on that topic of stranger anxiety, this was the first morning we had Alex take the bus to school. I was nervous about it for the past few days, and unfortunately, my nerves were at least somewhat right. Alex started crying the second I handed him over to the aide on the bus. It got to the point where he was leaning against the window where we were watching him, and he was just not in a good place. Sucked to see and probably not an image I’m going to forget soon enough.

Alex’s TOD let us know that he had arrived but had a rough transition after getting off of the bus and that Alex’s speech therapist was sitting with him to calm him down. Not long after THAT, she sent us a picture of Alex down in the gym area where he looked fine, CIs on, ready to go. I asked how he was doing and she said that he calmed down quickly and is now his happy self again, followed by another picture of him looking through a tunnel. That took a lot of stress out of it, but the bus situation is still going to have to improve. It apparently didn’t arrive until 9:20, which is 20 minutes after his “class” began, not to mention that it means he was on a bus for an hour and twenty minutes. If that’s really the norm, then coupled with the crying, we’re going to figure out how to get Alex dropped off to school ourselves. I have reasonable flexibility and Shannon can use FMLA if need be. I’m not as worried about the trip home, because each day  we took Alex him over the past two weeks he just slept in the car. So that’s not as big of a deal. The trip in is going to have to improve, though, if not just because of that twenty minutes he loses. We didn’t go to bat for him and push for early implantation and eligibility to get into school just to have a bus remove 10% of the time he’d get in there. So we’ll see what happens there.

Anyhow, school in general is going well, but have to iron out the transportation.

Alex’s listening skills continue to improve. Shannon and I still do structured therapies with him just about every day. Shannon has been “reading” a book to him that’s basically just big pictures with a lot of stuff in them, and Alex is getting increasingly better at being able to point to the things that Shannon asks him to find. I’m not sure how many words he has in his receptive vocab, but at this point I think 50 is being pretty conservative. Expressively, he isn’t doing anything much differently. There’s still a semblance of babble and we’re occasionally getting “muhmuhmuh”s, but they aren’t consistent yet. One of the things Alex’s speech therapist saw in school was that he has his mouth open quite a bit, so she recommended that we encourage more mouth strength by giving him more straw-based cups and less binkies, so we made that change pretty quickly. Everything that we’ve read and been told on the subject of expressive language is that one day, from out of nowhere, it’ll basically just explode. I’m eager for that, but at the same time, I know that because he’s doing so well receptively, he’s getting the input. If it’s getting in, it’ll come out.

He DID have a little spell last week where he’d fight it when we put his ears on. I saw it happen two or three times, which was uncharacteristic of him. I think it had more to do with the physical apparatus on his head than the CIs actually working, but it was sort of scary when it happened because my fear was that he was going to just start fighting every time. That’s a horror story that I’ve read more than a few times with other CI parents. That’s just about completely cleared out, though.

He continues to come along physically. At this point, he’s considered a walker. The one thing Alex won’t do at this point is get up in the middle of a room with nothing to pull himself on, but if he DOES have that, he’ll generally walk to his destination. His physical therapist is happy with his progress to the point where she said we could drop down from two sessions a month to just one, which we went for. Like me, Alex has pronated feet (standing up, his feet point outward instead of straight ahead). His PT recommended getting a customized shoe insert that would help to fix that. I’m thinking about getting them too if we’re going for it, why not? That’s it on the physical front.

Not too much else going on. Primarily, we’re just normalizing to yet another change with the schooling and busing. It’s a lot to handle, but Alex has already benefited so much that I’m more in a place where I say “this sucks, but we’ll get through it” instead of “I’m not sure if this is right.” When Alex doesn’t have his ears on, I’m so used to him being able to hear that I’ll still catch myself calling to him. I definitely like that the ability to hear is something I’m just automatically associating with the little guy.

Last thing worth mentioning is that there’ve been a few promising articles in the news over the past few weeks. A drug company is starting human trials with a genetic therapy, delivered by an engineered virus, that would trigger hair regrowth in the cochlea. The trials will end in two years. There was another article that just talked about how more biotech companies based around curing hearing loss are popping up. I’ve felt confident that this was going to happen, but it’s still amazing to read that actual candidates for a straight-up CURE are being delivered to actual people. Keep it coming, please.

14 Weeks In













9 Weeks in













Six weeks in

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.

A few weeks in









What else.







First Mapping Session

Writing this over a week and a half after the fact, but better late than never.

Alex had his first mapping session last Wednesday. Basically, the mapping process is where they adjust the settings of the speech processor to deliver different amounts of signal to the individual electrodes of the implants, which themselves represent certain frequencies. Shorter version: the sound gets customized to Alex.

The mapping process was yet another straightforward process that I thought would be more complicated. Essentially, our audi picked out six of the electrodes to customize for Alex, which were spread out across the 22 electrode spectrum. She would then go through each one of those electrodes and raise the amount of input / volume until Alex had a reaction, which for him was typically a sour face followed by a mini crying session. Once he did that, the audi would back the sound off immediately but make note of where the signal was that made him react. The process was repeated for both ears.

She explained to us that during our next mapping session, she would do the same thing for another five or six electrodes. Eventually, we’ll have all of his electrodes mapped to his specific response levels, and then it’ll just be a matter of tweaking.

Now, on top of all of this, we’re also still in the process of gradually raising the raw amount of input that Alex is getting. Our audi loaded the new maps onto Alex’s speech processors and gave us four programs to advance him to, same as last time. Our goal is to get him to program four by Sunday, then he has another mapping session on the following Wednesday.

The only other two things that I can think of from that session were that our audi was already working on getting an FM system for Alex, which is HUGELY appreciated because we’ll actually own it ourselves whereas many other parents don’t get to use one until their kids go off to school, and even then, the school would own it. If we have an FM System of our own, we can use it for noisier situations like car rides, loud restaurants, etc. It’ll be a great tool to have handy. The second thing was that our audi had never seen the Hearing Henry headband that we’re using with Alex, and she was impressed enough with it that she wanted to get some information on it so that she could request that each new child who comes through the Early Intervention program might be able to get one. I definitely dug the thought that we might have put something in motion that will help other parents / kids going through the same thing after us.

That’s it for the mapping session.

In terms of day-to-day, not too much has changed. We get a few more sound reactions from Alex, but they’re still pretty sparse at this point – maybe three or four a day. It seems that our best chance in getting a reaction is still to try to say something loud toward him when he’s in a quiet environment. I’m not close to being nervous yet since research has revealed that you don’t start to get those “I can hear!” reactions consistently for months, so at this point I’m happy that we’re getting any of those moments. Still just feeling very grateful that his hearing age is no longer sitting at zero.

The equipment still hasn’t been tough to deal with given the headband approach, at all. Still much easier compared to what we dealt with with the hearing aids. Again, have to credit the headband for that, because it makes it easy to put them on, to keep them on, and to keep track of. His batteries seem to only drop to a little less than 50% even at the end of the day when they’ve been on all day, so no issues there. At the end of the night, I take Alex up to bed with his processors still on, tuck him in, and only then take the headband off. I then swap out the batteries that have been charged into the processors and put the ones that were being used into the charger, then he’s basically ready to go the next day. Easy.

Next time I write I’ll tackle how daycare and recent therapies have gone.

But overall, it’s been pretty manageable. Kid is still a champ.

Great Video out of Stanford on Biological Cure

During a lot of my research on hearing loss and what sort of things are coming down the pipe for the next few years, I discovered Stanford’s Initiative to Cure Hearing Loss. I love just about everything about what they’re doing, down to the boldness of saying that they’re looking for a “cure,” which some sects of the Deaf community would likely be offended with. They’re approaching the biological fix from a few different angles (stem cells, gene therapy, molecular) and have made some pretty amazing strides.

I visited their site today just to check and see if there were any updates, and they actually posted a video that’s about an hour and a half long talking about where they are, how close they are, next steps, etc. It was a great state of the union.

tl;dw version:

  • Multiple approaches are being used because there’s multiple forms of deafness. The one that MIGHT be significant to Alex is a stem cell solution to re-grow the hair cells that may have been destroyed by the antibiotic that was given to Alex after he was born. The neat thing about this is that it’s slightly easier to remedy compared to a genetic issue, because Alex’s DNA is, to our knowledge, healthy, so no genetic issues would have to be spliced out prior to inserting into his ear.  Pretty cool.
  • Lots of parallels made to the Manhattan project and the idea that if you get a lot of smart people into a room, things get figured out quickly.
  • No real figure on when the “cure” will be made available, but the doctors all discussed it like an eventuality.  They didn’t specifically SAY this, but the highest hypothetical figure they gave out was 15 years.
  • Interesting point about how the team feels that they’re getting close to solving issues that big pharma will take notice and start pumping resources into them.
  • The video was clearly a fundraising type of thing, but they cited some pretty real examples of what they could get done NOW if they had more funding now.

The confidence that the team displayed regarding getting a cure out there has me pretty pumped up. I keep on looking at Alex’s CIs and telling myself that his current solution is the worst sounding and most invasive that he’ll ever have to deal with and that it’s all going to be downhill from here, but the idea that Alex could be given ear drops and just nullify the issue… that’s going to be amazing.