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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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.

The First Few Days Post-Activation

A few more notes about activation day…

A question we got asked a lot on Facebook and through text messages was how Alex was reacting to sounds – the answer was that he wasn’t at all because his program was set so low. No big deal, but I was a little surprised because I hadn’t read that after activation, the users still don’t react to sound until after a few mappings. No big deal, though. Given his crying reaction, I’d rather he be eased into it rather than thrown into the deep end and hate it.

When we got home and put the processors on, it was pretty tough to actually keep them on his head. Cochlear ships their processors with Snugfits – they’re basically a piece of bendable plastic that hugs the ear to help keep it on.  It looks like this: 

They actually didn’t work HORRIBLY, but Shannon and I counted having to replace the magnets (aka coils) 15 times for Alex in the span of an hour and a half. The Snugfits worked reasonably well when he wasn’t doing anything too crazy, but the kid’s almost a year old; he’s doing a lot of crazy stuff, throwing himself around, standing up on things, etc. The Snugfits didn’t really stand up to that sort of abuse. Every time Alex reached up to his head, we expected the processor to come off. Worse, we couldn’t really pick Alex up and snuggle up with him without expecting that his processors were going to fly off.

This all added up to a lot of stress and felt familiar to the feeling we had when we were wrestling with his hearing aids, albeit not quite as bad due to the lack of feedback and the knowledge that unlike the hearing aids, that his CIs were ACTUALLY doing some real good for him. The stress inevitably lead to a few more conversations about how unfair this was to Alex. We felt relieved when he took a nap, because that was a break from watching his every mood and anticipating having to replace the equipment on his head.

At one point we tried using a headband that we’d read a lot about, called Hearing Henry. We tried using it with the Snugfits still installed, but we couldn’t get it to sit on his head correctly at the first pass so we gave up on it quickly in favor of just getting them back on his head. Shannon and I agreed to mess around with the headband after he went to bed to see if we could figure it out.

I’d say ignoring activation, day one was really about starting to get acclimated and process everything that had been given to us, starting with just keeping the things on his head.

 

Day 2

At the end of activation day, Shannon and I resolved to give the Hearing Henry headband another shot. This time, I removed the snugfits, and Shannon put the headband together. When Alex woke up, we threw it on his head, and… thank god.

I have nothing but good things to say about this thing. It holds the processors to Alex’s head and does it securely, so I’m no longer watching him every second and expecting to see a processor about to come loose, on the floor, in a mouth, or even worse, flat-out missing. The headbands weave the wire that connects to the coil (magnet) through them, which basically means that when the magnet falls off, it’s always generally in a position such that you can just flip up the magnet easily. Add it all up, and basically this piece of cloth has greatly made the CIs a lot easier to keep on Alex’s head, which is actually a huge deal.

This might be self-delusion talking, but I also find the headband to be sort of cute and maybe even less weird-looking than the snugfits. I’ll eventually post some pictures of what all of this looks like (I REALLY need to include the activation video on the activation post, derp), but I think Alex actually looks sort of cute with him on.

That said, there’s no doubt that he’s still wearing equipment on his head. You can clearly see the magnets are still there, and the processors are still visible. That’s completely fine with me, though, because it’s more functional and frankly, I’d rather Alex “own” his CIs than try to hide them, and instilling that in him starts by my leading by example as his parent. I’m already envisioning putting Bills / Sabres logos on them and the like.

After Alex’s first nap, we bumped him up to the second program on his CIs, which were a volume level up from the first. I was all ready to flip back to the first program if it proved to be overwhelming for him, but the kid handled it like a champ. I don’t think he so much as flinched. We experimented with loud noises to see if he’d react again, but no such luck. Not unexpected or disheartening in the least at this point, though. Speaking of reactions, though – Alex definitely lights up a little bit when we first put his processors on after he sleeps. So there’s no doubt that he’s getting some signal.

We decided to go out for lunch to get the kids out of the house. This was Alex’s first outing with his equipment and I was anticipating some double-takes and the occasional stare. I think Shannon was as well, but we didn’t really talk about it too much on the walk over. When we arrived, Alex definitely got some looks. I keep telling myself that 95% of the looks he’s going to be getting are from curiosity, especially because in my heart of hearts I’d probably do a double-take as well despite knowing what they actually are. All of the other parents on the CI board that we read say the same thing – that anxiety eventually just outright disappears. It’s the outright gawking and murmurs of “what’s wrong with him” and “OH MY GOD WHY DID YOU ABUSE YOUR CHILD WITH THOSE THINGS” crowd that makes me more leery, though. At the restaurant, we got a lot of looks, but it’s gotta be said that I was actively looking for them. Shannon did notice a mom and her daughter who were sitting behind me that were outright staring at Alex and making remarks to each other about it with gross looks on their face to the point where Shannon was staring back at them for a good 15 seconds and they didn’t notice.  Again, I get the looks, but… a little tact. I’m still formulating how I’m going to handle the stares. Right now, I think just stating “You’re staring.” in a loud, matter-of-fact tone is the leader, because it’s a simple observation, yet it’s loaded with embarrassment and shame. Ha. Regardless – I was proud that we put that milestone behind us.

That about wrapped up day 2. The headband did an awesome job and made keeping the CIs on a relative cinch which lead to a relatively stress-free day and we got the first outing behind us. I went to bed that night with a feeling that this would be doable for the next five years until Alex gets his next upgrade, which are practically guaranteed to be smaller / easier to deal with than these. Good feeling, big win, go team.

 

Day 3

Day three was rather unremarkable. In fact, I only have two bullet points written down – he flinched a little bit when we turned his CIs on again for the morning, and we moved up to program three. Shrug.

 

 

We’re now on day six and on the fourth program, which is right where our audiologist wanted us to be. We haven’t had any major struggles with the CIs dealing with them ourselves, and the headband has kept things completely sane. Tomorrow is Alex’s first day at daycare, though, so there’s definitely some anxiety over how that’s going to go. Shannon wrote a great one-pager for the ladies watching over him which basically equates to “Keep them on him when he isn’t sleeping and here’s how you get the headband on!” which is probably all that’s necessary at this point. We plan on asking the good teachers at Buffalo Hearing and Speech if they can stop in at daycare and show the ladies some more about them, like the programs, what the buttons on the processors do, troubleshooting, etc. I’m really hoping it goes well, but I have faith in the teachers there. They took outstanding care of Taylor when she was in that room and they’ve all been following Alex’s progress steadily so they’re clearly invested in him.

That catches us up. I’m stoked that Alex is no longer just floundering – he’s on his way to catching up. Every minute those CIs are on him, he’s building up his foundation to hearing and speech. Excited and grateful.

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.

Post-Surgery Checkup

Alex had his post-surgery meeting today with his surgeon. His ears completely stopped bleeding two days ago, as did his nose. His incisions also still look great. We never noticed any sort of balance issues or change in feeding behavior, so really, we didn’t have any questions for him besides asking about him snorting occasionally.

The checkup was about as simple as it gets. He took a look at the incisions and ran a finger along them, probably to get an idea of the swelling. He then took a look inside of his ears and noted that he had a little bit of dried blood “flakes” in both of them, so we can expect to see those. He also mentioned that though the incisions look great, there’s a chance that they may widen as the skull grows, but even if it did, his scars would probably not be noticeable unless you knew to look for them. He also noted that the pink / red hue of the incisions can take up to two years to completely clear out, but I don’t really even notice it now. Bottom line, the kid is in great shape.

Aside from that, he basically told me that we were essentially done with him; not in a bad way, though. Alex hast his implants and his healing looks great. Unless he has any issues that are related to the implants, the surgeon’s job is finished! He said that he’d be keeping an eye out for Alex at Buffalo Hearing and Speech since he spends a day per month there, so he’ll be in touch.

All in all, it took fifteen minutes between walking in and walking out of the office. I unexpectedly felt pretty good about walking out of there, because unless something weird happens, we’re done with that. The feeling of finishing things and putting them behind us on this whole adventure is pretty refreshing. One last office to worry about.

Speaking of finishing things – we suspect Alex might wrap up his physical therapy soon. Despite the amount of heartache he gave us by not crawling until a little bit later, he’s basically exploded in the past two weeks in terms of crawling and pulling up on things. I think between this, the genetic results, and all of our physical therapist’s evaluations, we’re really just not all that worried anymore about his development for the foreseeable future. Our early intervention coordinator called me a week or two ago saying that she needed to get together with our physical therapist – I suspect this could be why. I know that when she goes we’ll both feel bummed, because she’s been a key cog in keeping us a little more sane over the last eight months. At the same time, though, that’ll be another great victory for our Alex. I really like that we’re getting to the point where Alex’s therapies are going to be in the hands of one organization that is constantly receiving accolades and that has already earned our trust and respect through the people we’ve met there.

That’s all I can think of that’s going on right now. Still blows my mind that he’s going to start hearing us in just two weeks. We’ll certainly be filming it, but aren’t expecting any insane reactions like the ones you see on Youtube. The way it’s generally done is that the sound is started at a low level so that it isn’t overwhelming, so a lot of times the audiologist will just look for very subtle signs that the patient is getting that signal and stop there for the time being. But we’ll see. I’ll be just as happy if it freaks him out, because we’ll still know it’s working.

Hopefully it’s all smooth sailing until then.