A few weeks in

I’ve been posting a lot less frequently, I think, because I think we’re really starting to run low on big events. We’re definitely on that road that we were pining for so badly a few months ago.

Alex had his second mapping session last week. It went well, and went much like the first. The audi chose a few different electrodes to map for each of his ears and increased the stimulation until Alex would react (cry), then immediately turn the stimulation off and mark where that reaction took place. She felt that Alex’s right ear was already pretty close, so more time was spent on his left ear. We were given four more programs to move Alex through. Our next appointment isn’t for another few weeks, but this next one should be exciting, because they’re going to put Alex into a soundbooth and test his reactions. That should give us an audiogram which will give us a semi-decent idea about what sort of sounds he can hear and how loud he can hear them at, but it’s still a little bit of guesstimating since Alex isn’t at the point yet where he can say that he picked something up. So that’ll be interesting.

MORE interesting, though, is how Alex is doing with his CIs in practice.

In short, he now reacts to sound. It was subtle at first. I’d make a loud noise and he might turn slightly, but I’d say there was a good chance that I was making it up in my head. I’ve been very skeptical given that we thought he could hear prior to his formal diagnosis. But no, not anymore, this is for real. After his last mapping session, something seemed to click. I’d say that about three out of four times, if his name is called and the environment is relatively quiet, he’ll stop what he’s doing and look for the sound. I doubt that he gets that when we say “Alex” that we’re directly referring to him, but frankly, who gives a shit at this point. His brain is at least starting to get the concept of sound and Alex is clearly making the connection that when his new sense goes off that something in his environment is probably happening, so that’s… well, it’s amazing. I was braced to not see any results for a few more months.

I told Shannon that in a way, I feel like Alex is almost “whole” again (running under the assumption he had hearing prior to receiving ototoxic drugs). Yes, he’s behind, yes, the quality of what he’s getting isn’t nearly as good as what those of us who have normal hearing experience, but… this kid now frequently responds to us making sounds.The simple act of seeing him look around for what made that sound relieves so much of that fear and anxiety that wrecked me over the past year.

He isn’t babbling yet, but that’s not really expected for another few months. I’m fine with that.  He’ll only be fourteen or fifteen months by that point, and it’s not like his peers are going to be reciting Shakespeare to each other.

Shannon ran to Target last week and picked up all of the toys that our therapists use for Alex’s speech session. I’ll probably describe it in detail, but the idea is you have two planes, two cars, two horses, two baby toys, etc. You associate a few words with each of the toys and repeat them to the kid over and over. The words should use LING sounds (which cover the spectrum of speech sounds). At first, the kid just soaks up the sound and makes the association that what he’s hearing, words, have meaning and relate to these toys that are in front of him. Eventually, the exercise will get to the point where if we just say “up up up” while Alex has a plane in his hand, he’ll move the plane up in the sky without seeing us actually do it to demonstrate that he’s only using sound to get his cues. Our therapists didn’t tell us that we needed to do it, but what they do there is so repeatable that it seems silly to NOT do it. We’re essentially giving him three times as much directed therapy as he would’ve received otherwise, and on top of that, he seems to enjoy it.

Speaking of therapies, I just signed the paperwork to get Alex bumped up to getting both speech therapy and teacher of the deaf therapy once a week instead of once every other week. Now that Alex has his CIs and is demonstrating that he’s getting something out of them, we’re all about maximizing the benefit that he can get. Our physical therapist was over last night and re-affirmed that Alex is doing fine physically. She’s guessing that he’ll be walking by late October or early November, and at that point I think she basically ducks out. We still don’t have any concerns about him physically. Haven’t noticed any balancing issues. Alex still likes to bob his head occasionally, but it’s become very obvious that he’s doing it just for fun. He’s also waving now, which is also awesome. Seeing all of the communication paths getting built is very cool.

What else.

Our audiologist has coordinated with our ENT to request an FM system and I know that our service coordinator has the paperwork for that, so hopefully we’ll get that soon and have another tool at our disposal if we’re in loud situations.

People staring at Alex for a little too long still bothers me, but not as much as it was before. Much of that, I’m sure, is due to the fact that I’m not looking for people who are staring, so that helps. It’s also nice that there are still folks who still stroll up and say “he’s adorable!” and the like. Regardless, my sensitivity to it is starting to go down, especially now that we’re starting to see some of the very real benefits. As always, I’m completely of the mind that the bulky and easily visible setup he’s using today is merely temporary, so that’s a positive thing to hold onto.

The headbands are still working wonderfully. He still tears them off his head occasionally, particularly if he’s bored, but the whole thing is still much easier than dealing with his hearing aids and, in general, just not really a big deal. No issues with the devices or any of the equipment. I can change the batteries out in like twenty seconds now. We definitely have a manageable groove now.

Daycare is still working out well so far. Every time I’ve picked him up he’s had his CIs on, and every time I ask how he did with them today I’m told that they were fine, had to be replaced a few times, but no major issues. I like that he’s “mainstreamed” already, even though it’s not actual school.

I can’t think of much else to jot down here besides that I think Shannon and I are definitely feeling pretty hopeful and happy with how things are heading. I don’t think I’ve had a “wah, he’s deaf” moment that was strong enough to put me in a garbage mood for a few weeks now, and I’m ecstatic with how he’s already reacting. His therapy team remains awesome and I feel like Shannon and I are doing a good job with him to make sure he’s getting all of the support needed to maximize his benefit with the extra therapies, so the buildup of momentum I’ve mentioned before is still in full effect.

Eventually I’ll start recording some of his hearing moments and putting them up here to show more concrete examples of the sort of stuff I’m talking about, but that’s it for now!

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Activation!

It’s been a whirlwind day.

Before I talk about activation, I thought I’d make mention of the weeks leading up to this event. Shannon and I have both been excited to get Alex going, but we also had our (now well-documented) anxieties of dealing with the equipment and keeping it on him, dealing with the looks he’s going to get, etc. Driving to the audiologist’s office at Buffalo Hearing and Speech this morning, Shannon described herself as feeling a little bit numb, which I could definitely relate to as well. There was definitely a feeling of running on autopilot, not expecting any miracles. In fact, we were somewhat ready to hear disappointing news; maybe one of the implants wasn’t working well, maybe all of the 22 electrodes weren’t in the ears… who knew.

Another thing that I think was on both of our minds was that getting Alex activated wouldn’t suddenly fix things, even with all of his therapy sessions. There’s a lot of work and no guarantees.

So, we walked into the office numb with low expectations.

Our audiologist and one of her student assistants pulled us back into one of their offices. We had two pretty sizable briefcase-ish things waiting for us, full of batteries, covers, cables, chargers, and a whole lot of other stuff. I saw that our audiologist already had his speech processors out and hooked up to a laptop. The whole thing moved pretty fast, so I’ll apologize in advance for missing some of the details.

Basically, the first thing that was done is she ran an impedance test. The point of that test is to check to see that all 22 of the electrodes in each implant are firing. In order to run the test, she had to put Alex’s speech processors on one at a time. I’ve written before that I was expecting this to be a pretty emotional moment like the hearing aids were, but it didn’t actually trigger anything for me. I think part of that was because the processors and the coil (the round magnet part) were both smaller than I thought they’d look on him, part of it was that I had already dealt with hearing aids and gotten over how those looked, and the other part was that THESE devices could actually help Alex hear. So that wasn’t a big deal.

Back to the impedance test – after Alex was “hooked up,” the actual test only took a few minutes per side. Alex didn’t claw at his ears too much, which was good, but he was obviously pretty tired at that point so we knew that we were dealing with a timebomb.

The tests finished, and our audiologist informed us that we were good to go – all electrodes for both sides were working and in contact! Basically, that means that the full range of sound that the implants can provide are available to Alex at this point. Our surgeon did a great job placing the implants. I breathed a sigh of relief here, because now I knew that the implants were both working and at 100%.

The next portion of the activation was to actually turn the microphones on and start to give Alex a sense of sound. Our audiologist explained that the noise is typically nonsensical to patients at this point as their brain learns to deal with the new input. The plan was to start the “volume” at very low levels and slowly raise them until Alex had a reaction. I was recording everything when she started this step and just kept the camera trained on him and Shannon. I thought we were going to have some more warning about when they’d be giving him sound for the first time, but that didn’t really happen, so when Alex reacted, I was somewhat surprised. His first reaction looked a lot like a startle – he froze up, pouted, then started crying into Shannon. I wish I could say that it was immediately an incredible moment, but I’m not even sure if a sound made him do that or if it was just the ambient noise of the microphones being turned on, so at first I was a little bit confused. Oh well, our video probably isn’t going to go viral.  Ha. I honestly didn’t get as emotional as I thought I would because it all happened so fast and there was no obvious sound that seemed to cause his reaction, so I didn’t have that gut “OH MY GOD HE HEARD THAT” overload moment. It was still awesome to see it work, but it definitely wasn’t the payoff for all of the buildup over the whole journey or anything.

Anyhow, that was his right side. The audiologist repeated with the left side, and we had the same experience. He cried when the right levels were found. So we know the CIs are both saying they’re working, the electrodes are working, and that Alex is getting input from them, even if it’ just a garbled mess at the moment. The loop is closed, now he’s got everything he needs to get his hearing life started.

After both sides were verified to be working, the work was essentially done. I think we had only been there for about 40 minutes at this point. From here, the audiologist and her assistant had us practice replacing batteries and putting the processors on his ears. The batteries should last Alex through the day – good to hear since I had read of some CI users who would only have their batteries last for 6 or so hours at a time.  Our audiologist then wrote down part one of our plan.

Alex’s CIs have four programs on them right now. The idea of CIs is to slowly bring them up in how much “volume” they give to the user so that it doesn’t overwhelm the user and gives the nerves time to acclimate. The analogy that was made to us was going from a pitch black room to a bright room and the need to let the eyes adjust slowly. Our goal for the next seven days is to move Alex from program one to four, which is the loudest of the batch that the audiologist programmed into the speech processors. Tomorrow by the end of his second nap, we’re supposed to have him on program two. As Alex’cs CI levels are brought up, the sound that he’s getting will also be “shaped” by our audiologist to help maximize the quality of what he’s getting.

That was just about it. Our audiologist, like the rest of our team, is awesome. She was clearly invested in Alex and excited to get going with him. She even played with him for a while before we left.  We took the CIs off of Alex before we left since they’d come off in the car anyhow (we’ll work on that and see what we can do).

The rest of the day was interesting, but that’s probably better left for another post.

Overall – thrilled that we’re at this point. There’s a shitload of work in front of us, but Alex has his CIs and they’re working. They might be ugly and they might not sound incredible, but they’re enough for now and they’re only going to get better. Activation wasn’t a massive deal at the end of the day, though it was still a big step that’s now behind us.