Alex

The Day Before

Posted by

1

When I first started researching CIs after we found out that Alex was deaf, I was really interested in getting an impression of how parents felt prior to the surgery. What I could find was pretty sparse, usually just one-liners about it being but scary but exciting, so here’s my opportunity to jot some things down.

Overall, it’s a crazy mix of emotions and thoughts to the point where I feel somewhat numb because there’s so much going on all at once.

I can barely believe that this is happening tomorrow, first of all. It feels like we’ve been waiting for this day for years now, even though it’s only been a few months. It seems crazy that tomorrow we’re going to walk into a hospital with our boy without an implant, and (hopefully) walk out with our boy with one. There’s been so much hype to sending him down this road that it’s staggering that he’ll have the raw materials needed for hearing in less than the span of a day.

Despite Alex being deaf, I feel lucky that Alex is getting his CIs early, that he was eligible for them, and that that technology exists today, and for all of the advances he’ll see in the future that will hopefully continue to take away the compromises he has to make as a result of his deafness.

I feel blessed and overwhelmingly grateful that we have an awesome team already assembled and ready go for him. In fact, his speech therapist texted me today and told me that she was thinking about us, and to keep her in the loop. I was telling Shannon that it’s such a small gesture on her part, but it means the world to know that the person who’s going to help drive Alex’s speech is already so invested in him. I know the others on the team feel the same way as well. The same, of course, goes for both of our families, who are going to support the crap out of this kid.

I’m incredibly heartbroken that his perfect little baby head is about to be cut open and sewn back together. There’s no real way to lighten that up without being dishonest. I know that we have a great surgeon and that from the pictures I’ve seen, that healing is quick and the scars aren’t really visible most of the time, but I utterly despise the fact that we have to do that to our baby in order to give him his shot at what so many other kids have by default.

I’m scared about the surgery for a few reasons. As helpful as the Facebook CI boards have been for us, today they’re filled with posts about post-op scariness in the way of swelling, infection, that sort of thing. This is a pretty straightforward surgery, but there’s no such thing as a surgery without risk. On top of that, Alex has developed a cold in the past few days. Last night he was coughing frequently through the night to the point where he woke up; I had to “fix” him a few times until he finally went down. Even then, he was coughing through the night. Our sleep was not the best, and I’m sure Shannon’s was even worse than mine. If Alex is too sick (and the criteria for what that means seems to vary), his surgery could be postponed. I feel in my gut that that isn’t going to happen if not just because kids are ALWAYS sick and, on top of that, I think that he just has some post-nasal drip, but the possibility is there. Luckily he’s home with his aunt today, and she’s reporting that he’s getting plenty of sleep, is eating well, and isn’t snotty or coughing much.

What I’m really trying to hold on to, though, is my excitement to get this kid going. Shannon recently blogged about how much it sucks to see that Alex is REALLY starting to get behind his peers now in terms of speech and language. It’s scary to see it creeping on and know that it will only get worse as time goes on without any intervention. There have been a few awesome videos on the CI boards recently that show what some of these kids can accomplish even after just two or three months; the two that come to mind are one that shows a child reacting to words without any visual aid and another of a boy who was babbling and then said “bahbah” or something similar. It completely blows my mind that, if we’re lucky, Alex could be babbling and even give us a word or two by Halloween or Christmas. And what a difference one year would make. Last Halloween we had learned that Alex had some degree of hearing loss, but it wasn’t known exactly how much it would be. We were thinking hearing aids might’ve just been able to do the trick. We were sad, but it wasn’t the end of the world. By Christmas, we knew that he was deaf and were just crawling out of the resulting pit of depression. I think we really lost that Christmas, which is a time that our little family usually loves, so the mere idea of him babbling or having a word or reacting to sound this time around would be a complete and amazing 180 from last year’s experience.

The roller coaster analogy seems very fitting here. It’s sort of like when you’re being taken up that first hill and you look around and can see all the twists and turns, but you can’t see the entire track laid out and trace it from start to end, so you just settle back and get ready for the ride, because there’s no getting off now anyhow.

I should also say that I’m very proud of Shannon and I for getting to this point and staying sane. It’s pretty awesome to know that our marriage not only withstood this initial shock, but made it just a little bit easier to deal with because I know that I had her in my corner. We’ve luckily been on the same page with all of the important decisions; there was never a big heated debate for us about whether or not to send Alex down this route or not, it just boiled down to “do we want him to have this opportunity?” and the answer was always “yes.” We certainly think differently at times, but I think the differences are complimentary and beneficial to us as a team. We’re both invested as hell in this kid and maximizing what he can get out of this approach. Countless conversations have been had strategizing how we’re going to give this kid the best go at it and what we can do to support and cheer him on. We’re going to jump at any opportunity to help him along and give him a kick-ass life, we’ll spend whatever amount of money it takes. We’re a focused team and giving 100% to Alex feels completely natural, not something impeding on our lives.

If you’ve looked up any deaf / CI stories about kids who went the speech route, you’ll know that the surgery is really the beginning of the story, but I think that the surgery is to the beginning of that story as stepping out of an airplane is to going skydiving. Tomorrow, we commit to a decision that will have some permanent implications, but I really feel that we’re doing the right thing for our own child.

Anyhow.  If we’re lucky and everything goes smoothly, tomorrow Alex will get his surgery. It will take about six hours. After a few hours of observation, we’ll be able to bring the little guy home tomorrow night (for anyone who cares enough, I plan on posting updates here in the form of quick posts). He’ll have a bandage on his head for one or two days, and when that comes off, the incisions will heal pretty rapidly afterward from what we’ve seen. He’ll have a post-surgery appointment during which we’ll be told that he’s healing wonderfully so far. For a few weeks after that, he’ll continue to heal up. We may or may not put his hearing aids back on just to make sure that he stays used to the idea that he’ll have stuff on his head. We’ll keep pushing him to get crawling and moving. A few days after the 4th, Alex’s CIs will be activated and he’ll be exposed to the world of sound.

I’m definitely afraid that everything won’t go as smoothly as above, especially because most of our experience with this little troublemaker has been the opposite of smooth, but… I’ve got faith in this kid and the supporting cast. I think we might just get our Christmas babbles this year, but there’s only one way to find out.  It’s time to take the leap.

Advertisement

Alex has Hearing Aids

Posted by

1

2/18/14, 3:00pm

At some point in the past, I think I wrote about how I felt that getting Alex’s hearing aids would be a double-edged sword. Well, I guessed right.

It’s been an emotional few hours. Alex’s dispensing appointment ended just three hours ago at the time of writing this. The appointment itself was very straightforward. We arrived at the building with a few extra minutes to spare; the roads in Buffalo are somewhat messy today. In the waiting room, I saw my first cochlear implant user in person – he looked to be in his 40s and had one CI. The magnet was underneath his hat, somewhat hidden. I couldn’t stop looking – not because it was weird, but because I’ve done so much research on these and had yet to actually see a person wearing.  He was at the office with his daughter. Our audiologist approached them both in the waiting room with a few CI parts – it was then that I saw that the daughter also had a CI. She had a light speech affect when she spoke, but I later learned that she was implanted after having been in school for a while with hearing aids, so she learned to speak based on them. Regardless, it was amazing to see. Aside from the SLIGHT affect (which I was actively listening for), you would never have known she was a CI user. Of course, it helps that the daughter had long hair, but still. Just very cool to see.

When the audiologist was in the waiting room taking care of the family I mentioned, she spotted a few other patients, gave them hugs, exchanged big smiles, etc. Loved seeing that sort of interaction. I’ve felt that our Early Intervention team is truly going to be a major influence on our lives, and to see her genuine reactions was both touching as well as exciting as a parent who was about to start down the path with her.

We met with our audiologist on time (you really begin to appreciate these things after you go to enough doctors appointments). It was my first time meeting her, but between what I’d seen in the waiting room and all of the recommendations that had pointed us to her, I already had a very positive first impression.

As far as the dispensing process went, it was an understandably clinical affair. The casualness of it was tough to deal with, though. Shannon and I, up to this point, hadn’t had to deal with anything visible on Alex indicating that he was deaf. He’s still so young that his deafness isn’t evident in our everyday interactions with him. So after our audiologist put Alex’s hearing aid into his little baby ear for the first time, it hit hard. I knew it was coming, but that action seemed to bring a close to one phase of his life, where no one would know that he had any issues and where his physical needs were that of any other child, to an end. A wave of sadness passed over me, and I knew it had to Shannon as well, who was brave enough to hold him throughout. This didn’t last for entirely too long for me, though. The rational part of my brain kicked in and I reminded myself that we’re doing all of this so that Alex will be able to experience sound, and that’s the goal. This isn’t going to be easy or handed to us or him, and I think it would’ve been odd if WE were very casual about it. I wonder if parents who have to get their kid glasses go through something similar?

His hearing aids are pretty small, even on his little ears. We chose a silver color because we wanted to give him a spiffy color without it being insanely fluorescent, but also didn’t want to try to completely hide them with a clinical beige. Our audi (let’s go with that to keep things short) explained how to insert them into Alex’s ears, how to change the batteries, how to store them, etc. She told us about next steps, which involve testing Alex with his hearing aids in a sound booth, and tweaking the aids (which basically means turning up the power). After she finished with the boilerplate, we talked about Alex’s upcoming surgery date; she was surprised that we had one that early. She also explained that she’s worked with our doctor quite a bit, and that he does somewhere in the vicinity of 50 surgeries per year. That’s quite a lot if you think about it. She also stated that if she had a child who was going to get a CI, that she’d go through him. That was all great information and very relevant; Shannon and I have talked a lot about how, if we find out that Alex is eligible for implants, that at that point we’ll really research doctors and surgeons across the US to determine who we should go to if our current surgeon didn’t have a lot of experience. It’s good to know that if we’re lucky enough, it’ll be less of a decision to make.

After the mini Q&A, we made two follow-up appointments. One for Alex’s next hearing aid tweak, coming up in a week or two, and one for his activation(!) for the week after the fourth of July. I tried to see if we could get in beforehand so that Alex might be able to hear fireworks, but in reality, there’s no way we’d have the kids up that late at night anyhow. Ha. Our audi gave us a little bit of insight into the activation process – it’s about two hours long, and the idea for the first “stimulation” is to give the child just enough sound that they visibly respond to it. She explained that usually, the reaction is annoyance. Then she takes it back a step. At subsequent appointments, the sound will be brought up and up as the child learns to tolerate their new sense.

By the time we finally left, Alex was clearly tired. His hearing aids were out for the car trip, because they will whistle if they’re close to a surface, like his car seat. We left to pick our daughter up from daycare. I think Shannon and I were both in relatively good spirits afterwards, though we were both on the same page of regarding the moment his hearing aids were first put on as being a really big deal, even if he’ll only be wearing THOSE for a few months.

Things got tough when we got home.

We put Alex’s ears in, and had trouble getting them to stop whistle. Most of you have probably heard what a whistling hearing aid sounds like – it’s a quiet, but annoying screech that has a weird digital quality to it, like a really bad MP3 downloaded from Napster circa 2000. I was having a lot of trouble getting the sound to stop. What made it worse was knowing that that sound was being blasted into his ears. Now, I know that he’s deaf and can probably barely hear that if at all, but that whistle is a very blatant reminder that my son can’t hear. I took a big emotional dip here. As I said before, Alex is at an age where you wouldn’t know that he had any hearing loss or anything else wrong with him unless you were going out of your way to test his hearing. Now, all of a sudden, there are two devices visibly strapped to his ears and this goddamned sound that’s coming out of them every few seconds. It completely broke my heart.

Taylor was in the room while Shannon and I were wrestling with Alex’s hearing aids – she took immediate interest. I know that this probably sounds like it’s a good thing, and Rational Me says you’re right, but I couldn’t help but feel hurt by it. I don’t think Taylor has really “gotten” that Alex can’t hear her, and now she did. I felt sorry for her, as if something was just taken away from her as well. It was a stupid thought, but you can’t trump emotion with rationale, so I welled up a bit.

We placed Alex on his bouncy seat with his hearing aids on. I was somewhat pleasantly surprised that this didn’t make his aids whistle too badly, even though they were clearly going off every time he moved his head too far to one side. Shannon got her camera out and snapped a few shots. Alex was still whistling, so I took him out of his chair and laid him on my lap as I sat down. His ears were still whistling. It was another dagger to the soul – I can’t even hold my own boy now without his disability coming into play. I know that we’ll figure out how to get the whistling down and that we’re going to learn how to deal with it like it’s second nature, but it’s a very visceral punch to the gut.

I put Taylor to bed for her nap and came back downstairs. Shannon flipped her laptop around and showed me one of the beautiful pictures she had taken of Alex, and it immediately brought me to tears. No particular reason, just the straw that broke me down from the whirlwind of the day’s events.

Alex Hearing Aids

2/18/14, 5:00pm

Well, got the above out of my system. As it turns out, the abundant whistling that we were experiencing out of Alex’s hearing aids was just because we didn’t have them in his ears completely, causing them to feed back. We both knew that could happen, but I had thought I had them in good enough. Shannon figured it out like the warrior genius that she is, and the whistling subsided almost completely. I quite love this woman. Anyhow – I was holding him as usual, sans whistling, shortly after. Huge relief. The whistling was just the salt in the open wound, so for it to go away was very good for my psyche despite how silly that might sound.

Afterward, I headed outside to shovel out the driveway, which gave me a little bit of time to think and put things back into perspective. Knock on wood, but right now, he isn’t in a wheelchair / paralyzed. He isn’t dying. He has a very common ailment that’s being aggressively worked on, from multiple angles, to either nullify or flat-out cure. His first assistive devices will be the bulkiest and crudest he’ll ever use. I walked back into the house feeling just a little bit better. It was tough to submit to putting equipment on my son, and it’s going to be tougher to actually put him through a SURGERY… but you know what? We’ll bust our asses for him and persevere. I know our boy is going to amaze us every time I look down at him and he gives me a huge smile back, as if he’s telling me that he already knows that everything’s going to be completely fine.

It was a roller coaster of a day, and as I told Shannon, it won’t be our last.  It’s a tough road, but it’s still one that we’re happy to be on given the circumstances. It’s all worth it to slowly open the world to him. One step at a time.

A Very Busy Week

Posted by

2

Well, the title says it all.

Yesterday:

  • I took Alex to his three-month checkup at the pediatrician’s.  We talked for a bit about Alex’s hearing loss, but otherwise Alex was looking good from what the doc could see.  Good measurements, etc.
  • Our ENT called to give us a phone number to call the genetics department at the hospital Alex was born at.  We’re absolutely going to do it, but my heart races a little bit at the prospect of doing it and learning that our poor little guy has more hardship coming at him.  It may also show that Alex’s hearing loss is the only genetic challenge in front of him, though.
  • Buffalo Hearing and Speech confirmed an appointment we had next week for another ABR.  I asked to be transferred to the audiologist’s voicemail to give her an update on the whole auditory neuropathy thing, just to see if she still wanted the appointment for an ABR or if she wanted to do something different with the time.
  • Shannon was called by the hospital to confirm a follow-up appointment that they do with all kids who were born in the NICU.  From the sound of it, it’s going to be another evaluation to see how those NICU kids are developing and to catch anything early.  It seems pretty redundant at this point, but whatever.

Things are definitely picking up, which makes me generally happy.  It feels good to be taking steps forward.  There’s some sadness in all of the appointments because it feels like a sneak preview of what our life is going to be for the next god-knows-how-much-amount-of-time, but I’m taking the optimistic route and looking at all of these appointments as the beginning of us chipping away at the sum total that Alex will have to go to.  Taking yet more comfort from the hearing loss parenting board we’ve joined, it’s also cool to see that a lot of these parents are asking each other what they bought for their child’s therapists and audiologists for Christmas.  It firms up the notion that these folks are really here to go to war with Shannon, myself, and Alex and they’re going to have a huge impact on Alex’s life.

The audiologist from Buffalo Hearing and Speech got back to me today to respond to my voicemail.  This was the same kind soul who had to give us the news about Alex’s profound hearing loss but did so in a very sweet way, so it was nice to speak with her again.  Her general take on the auditory neuropathy confusion was basically this – the treatment is the same whether it’s AN or not, so it’s not worth losing sleep over it.  I asked her how many AN kids they’ve seen and how they’ve done, and it sounded like a dozen or so had come through and that they had done just as well as the other kids.  She also said that the results from Children’s were encouraging if for nothing other than the fact that the AN indicators she might’ve seen could have just been fleeting.  At the end of the day, her stance was that another ABR wouldn’t be necessary because it wouldn’t really change anything and that we could use our meeting time for something much more productive – getting Alex fitted for hearing aids!  That definitely perked me up.  Even though putting those hearing aids on Alex’s head is going to be tough because it’s going to drive home how REAL the idea of him wearing something on his ears / head for the foreseeable future is going to be, the thought that they might help him pick up some environmental sound and get his brain hearing more trumps the aesthetics, which I firmly believe are going to be temporary anyhow.  A few other tidbits of good news coming out of that phone conversation:

  • Bless our audiologist’s heart, she’s going to try to get the head person at the oral school on the phone to speak with us during our meeting so we can ask any questions we have for that track (the other of which is the ASL / total communication route).
  • She hasn’t seen any kids roll through in a long time that weren’t eligible for cochlear implants because of physical limitations.  Though that’s clearly not a guarantee that Alex is going to be the same, it’s good to know that if we choose to go that route, it’s likely the option will be there.
  • My dad as well as a local parent who is on The Board (which is what Shannon and I call it and what I’m going to use from now on to describe the fantastic Facebook board I’ve already gushed over) both recommended a specific audiologist in the area who’s apparently wonderful with kids and gets great results.  Her name was brought up during the conversation because she’s apparently hopeful to work with us, so I immediately said “Yes, we’ve heard great things!”  Great to know that the person we’ll be working with has already come highly recommended and is experienced.

So overall, a good conversation.  It would’ve been ideal if she had flat-out said “Yup, those other ABRs definitely cancel mine out, no AN for you,” but I still consider it all a solid win.  We’ll take what we can get.

The next two days will also be busy.  Tomorrow we meet with Early Intervention for Alex’s evaluation as well as the formation of his plan, which I don’t think should be anything too insane.  We know we want to go with Buffalo Hearing and Speech regardless of track.  Saturday we actually have an interview with a nanny.  We’re hoping to find someone who’s both reliable as well as experienced who can watch the kids for two days a week.  It’s easier on the kids, it gives Alex more one-on-one time, and it’s easier for Shannon and I to get straight to work and drive straight home to maximize the amount of kid time we get.  Shannon and I have already talked about how we want to supplement anything that therapy does with Alex (or ASL lessons) with him as well, so getting those extra 30 minutes for two days a week will be huge in helping Alex out while also not taking away from Taylor time.  The Boards have mentioned a few times that their children actually find the therapy fun, so with a little bit of luck our little sessions can feel more like play sessions.  Who knows.

In the midst of this whirlwind of activity, it’s a depressing thought that we have to take the efforts to integrate all of this into our lives, but I think we’re all about ready to get to work.

A Sliver of News on the AN Diagnosis and other Thoughts

Posted by

0

For the first time in what seemed like forever, we actually had a pretty nice weekend.  None of our evenings were complete Google-fests that got us worked up, and we were able to really enjoy our kids and the family dynamic in general.  Good for the soul.

On Saturday we went to Shannon’s workplace.  They’re a relatively family-oriented company, so they offer a breakfast where Santa shows up on a firetruck, kids get to ask for presents on his lap, etc.  There are various activities for the kids to participate in as well.  It blew my mind when I thought of the fact that this was actually the third time our daughter had participated in it, even though she’s only two.  Crazy how time flies.

Something I’ve found myself doing A LOT now when I’m in a semi-crowded area is searching for people with hearing aids.  I’m not sure why, exactly.  Maybe it’s to comfort myself that Alex won’t be alone in wearing assistive hearing devices (should he be lucky enough).  Maybe it’s because I’m interested in seeing how those people “do” in louder environments.  Regardless, one thing that particularly caught my attention at the event was the amount of people who were wearing glasses, kids included.  And though this analogy is obviously flawed, it made me think that if Alex is wearing assistive tech, is it really THAT fundamentally different than all of these people with glasses or braces?  Now, of course there ARE real differences.  Glasses are practically a fix.  You put them on and you’re ready to go.  With hearing aids / implants, therapy is basically required to teach children like Alex who weren’t born with hearing to learn how to use their sense and get them “caught up” with the hearing children who did.  Glasses are also very common on little kids, whereas hearing aids (let alone cochlear implants) aren’t.  Still, it lends a lot of credence to a common experience I’ve read from many different parents, and that’s that though their children’s peers are often curious about the implants, a simple “these help me hear” explanation suffices and that’s that.

It’s probably a coping mechanism and reach in general to say that an implant is similar to a pair of glasses, but it still brings me some comfort because there ARE some parallels there, the biggest of which is that a person with glasses who’s practically blind without them isn’t defined by them.

Anyhow, it was a nice little family event.  I was telling Shannon that it’s going to be very interesting to see what’s going on with the family at this point next year.  Maybe Alex will be a few months into his hearing journey by that point?  We’ll see.

Later that day I ran out to grab a pizza (our appetites have officially returned, which feels good) and grabbed our mail on the way out of the driveway.  In it was a letter from the hospital containing the official ABR report from Alex’s last test (this was the test where the audiologist doubted the auditory neuropathy diagnosis from a prior test).  I anxiously opened it to see if there was any new information – she may have collaborated with the other audiologist to compare notes, as I know that what gets sent to doctors / professionals is much more detailed information than the write-up that they send to patients.  But there wasn’t!  The write-up indicated that no signs of auditory neuropathy were observed in EITHER ear.  Again, this isn’t really news, but it was somewhat comforting to see that written out on the official report.  A little bit of hope.

We have another meeting coming up with Buffalo Hearing and Speech which we’re assuming will consist of yet another ABR, so maybe at that appointment it can be hammered out either way. We’re still really hoping it isn’t AN because that would mean that Alex might get some benefit from the hearing aids he should receive within a month and, more importantly, give Alex a better chance of not having any other associated health issues.

Speaking of appointments, Alex has a pediatrician appointment tomorrow.  I’m looking forward to asking a few questions to our awesome doctor and hoping to walk out with a clean bill of health that I can then report to the Early Intervention evaluator that’s coming over on Friday.

Emotionally, it’s still a roller coaster.  It’s easy to get caught up in both the lows as well as the highs (though a “high” is just feeling relatively normal).  The Facebook group I mentioned has been a great source of information, comfort, and realism.  What’s great about it is that there are tons of great uplifting and happy stories, but at the same time there are also real stories about the occasional sadnesses involved.  A great example was a mother asking the board about what they said to their kids when they got to the point where they’d ask why the other kids didn’t have to wear “ears” or when they’d be able to take theirs off.  Leaving my techno-phile hat off and ignoring my belief that that’s all going to go away given time, I appreciate those stories because it gives us a hint as to what we MIGHT be in for and it also makes the happier stories all the more real and graspable.  Needless to say, I’m now a big believer in the power of support groups.

Alex is also helping us to keep our heads up by being a good little guy in general.  We’ve gotten a few laughs out of him and he definitely likes to smile at us, which I like to interpret as his faith that we’re going to do everything we can to help him kick as much ass as possible in this world.  There’s always just a little bit of sadness with each of these moments, though, because you can’t help but wonder WHY any of this is happening to such an innocent and happy little dude.  I often feel bitter that Alex is our last child and we can’t even enjoy him and the completion of our family as much as we would be in the alternate universe where he was completely fine.  That isn’t to say we don’t love him as he is now, obviously, but there are very few moments when we’re not thinking about the whole thing and worrying about what’s coming up and if we’re doing everything that we can for him.  It pisses me off that we can’t enjoy this time to its fullest.

All of that said, we’re definitely doing better.  We’re smiling a little bit more and depressed a bit less, though there’s always that underlying sadness present.  I think we’ve come a long way in a few weeks.  Getting rolling with Early Intervention this Friday could go either way.  I’d like to think it will make us feel better because it’ll feel like now we’re actively doing something for Alex, but it could also be a reminder of the long road ahead of us that we didn’t choose.  We should hopefully get closure on which way Alex is going to go within a few months (hearing and mainstreaming or visual / ASL / deaf school) which should also be a big help in getting us moving down the path of what’s best for Alex.

Just keep swimming.

Putting my Money where My Mouth is

Posted by

0

I’ve always loved technology.  I still have very fond memories of playing with the family’s TI-99 console back in the day with my dad and how much excitement I got out of going to the local Big Lots with my mom and sisters where she’d let me pick out a game for our Atari (and maybe a model airplane, if I was lucky), and endlessly fiddling with our various home PCs.  Way back when, we had a monochromatic monitor with a simple, cursor-based word processor.  I didn’t love writing, but I loved playing with the thing.  The power of these devices, of course,  is a complete joke compared to what most of us now carry around every day in out pockets.

As I got older, most of the money that I earned working at the local pizza joint was piped into upgrading the family computer to soup-up my video games, then later into buying my own computer that I pieced together.  I went to college and majored in Computer Science, and today my profession is that of a software engineer / architect.  Buying a new piece of tech still brings me that childlike joy.

Because of my love and experience with tech, I feel like I have a pretty good pulse on how quickly it moves and what’s coming down the pipe.  There’s a guy out there by the name of Ray Kurzweil.  He wrote a fantastic book called The Singularity is Near.  The basic premise of this book is that technology is advancing at such a rate that computers will eventually be able to build faster and smarter versions of themselves, which will then go on to build faster and smarter versions of themselves, etc.  Basically, there’s a tipping point where computers will flat-out be smarter than humanity, at which point we’ll generally see some serious shit as every complex problem that exists in the world gets solved by rapidly-improving AI.  I think the projection was that this will all go down in 2040 or so.  I happen to think that the premise is inevitable, though the timeline feels either too aggressive or too incredible to accept.  Pick one.

I bring all of this up because it colors my perception of Alex’s hearing loss and what the future will hold in the context (AND THIS IS IMPORTANT) of what sort of opportunities he will have to be able to hear this world if he wants.

At this point, we’re not sure if Alex is even going to be eligible for any sort of cochlear implant (which would be necessary given his 90db hearing loss).  It seems pretty sad to us that our biggest hope for him at this point is a pair of relatively invasive surgeries that, if successful, will still require him to wear a very conspicuous apparatus on both sides of his head, but I find it amazing that this technology exists and has helped as many people as it has who want to hear or restore some of their hearing NOW.  In five years or ten years… these things will not look the same, or sound the same.

I have little doubt that within ten years a fully-implantable implant will be available for Alex that will perform better than whatever he might be implanted with today (if we’re lucky enough to be eligible for that option).  I actually brought this up to the ENT at our first meeting, who rightly said “But if it’s working, why go through another surgery?”  A perfectly valid point.  My mind at that point, though, gravitated toward “He’s right.  At that point, we’d wait until he’s 17 or 18 years old to get the best out there prior to college and take advantage of less traumatic / invasive operation methods and make sure that he’s the driver of that choice.”

Before I get off the topic, a cool note that the ENT brought up – Cochlear (one of the big three manufacturers of cochlear implants) implanted a few users with a very interesting design.  The internal portion of the implant includes microphones, which means that even when the user takes off the external piece of the apparatus, they still have some trace hearing through the internal part.  Essentially, it’s completely invisible hearing.  This implant also allows the external apparatus (the part that looks like the hearing aid and wire that leads up to the head) to be used, which allows the user to hear much better than using the invisible hearing mode.  Though the invisible hearing isn’t nearly as good, it’s still amazing to me that users would have the option of being able to do things with SOME hearing such as sleep, go swimming, etc, all without the clunky visible pieces.  Even cooler –  these folks were implanted eight years ago.  God knows what they’re testing behind closed doors today.

A like-minded friend of mine made an astute observation that I hadn’t considered, and that’s that the baby boomer generation is greatly helping to push money and resources into development of hearing aids / implants as they age.  Alex’s condition is clearly not a blessing (at least to us, no offense to the Deaf community intended!), but the fact that it affects as many people as it does makes it a high-visibility issue that researchers from different fields as well as assistive-technology companies are racing to address in increasingly innovative ways.

My dad was recently over at the house – he’s worn hearing aids for years.  I appreciate the hell out of the man, and I love getting his perspective as a guy who’s worn hearing aids for years and is generally well-researched.  He’s re-iterated many times that his hearing aids have VASTLY improved since he first began with them.  It’s great to hear that reinforced from a guy who lives in that world and has actually seen (heard) the benefits.  It makes it all more real.

Getting my feet back on the ground – all of this could of course be a moot point for Alex’s immediate future.  We probably won’t know if Alex can take cochlear implants for months, and even if he can, we don’t know how well his body will react.  Even if his body reacts well to them, the implants are only part of the equation.  Therapy and hard work is the other, larger part.

Overall point… it’s been wonderful and comforting to see what these technology-driven implants are capable of affording the young and old alike and to think of how much they’ll improve in the coming years.

Shannon and I recently joined a Facebook group of about 2000 parents of children with implants.  The stories and videos they put up are mind-blowing.  Kids singing in tune.  Stories of mainstreaming children with little to no issues.  Playing in the school’s orchestra.  Speaking with no sort of affect.  Videos of kids saying their first words only a few months after implantation.  Stories of honor roll, wonderful social lives, sports, music… the list goes on.  It’s been great to look at the results as well as the support system that’s in place in that group, as well as the sheer number of folks posting within.  These aren’t isolated superstars, they’re a large segment of kids with loving parents who fought through the surgery, dealt with the processors falling off, and got through the therapy to get their kids over the mountain that Shannon and I are staring in the face right now.

It’s all both inspirational as well as terrifying.  If the tech gives us an opportunity, Shannon and I will do whatever it takes to get Alex the therapy he needs to get the best results possible for his brain to wire itself up for hearing / speaking.  If we get the miraculous results that some of these folks are getting, then as time goes, the implants will get smaller and better, perhaps to the point that they’re always on, invisible, don’t need to be charged, and are either as good or better than normal hearing one day.  Perhaps the enormous amount of stem cell therapy being researched for hearing loss will give Alex a purely-biological option.  It’s terrifying because this is all building up a great amount of hope that could be squashed and send us down the path of devastation again.

If there’s a greater power steering any of this, I’ve considered that perhaps it decided to put my faith and interest in technology to the test by taking Alex’s hearing from him.  Granted, that’s a bit jerk-y of said power to do, but the thought has crossed my mind.  Hence the title of this entry.  Though it’s true that if we’re lucky enough to be able to go down this road (and yes, I know how odd it is to call it “lucky”) that our family’s dedication to our new addition and elbow grease will be more important to his success than the implant, it can’t be denied that the implant is still necessary to allow Alex to hear our voices in the first place, and it WILL improve, just as braces lead to invisiline and thick coke glasses lead to lasik.  It’s a huge component of Alex’s potential hearing future.

If… IF we can get the implant early on, when language development is key, I see a future for Alex where his disability melts into the background of his life in all ways and that the combination of hard work, technology, and familial dedication will overcome that mountain that was put in front of him.

We just need the chance.

First Meeting with Early Intervention

Posted by

0

Just a few small updates.

I met with Early Intervention for the first time yesterday.  The way it works is an initial service coordinator comes out and basically explains what the next steps are at a high level.  They are:

  • An evaluation has to be performed.  This evaluation is basically what enables your child to participate in the program.  We were told a few times that Alex’s hearing loss diagnosis was probably enough in itself, but as part of the necessary boilerplate (this is a government-funded program, after all), an evaluation still needs to be done.  The evaluation itself is apparently only going to take about an hour or so, and they’ll be looking for other potential issues Alex might be having.  Tummy time was mentioned a few times, neck strength, motor skills, that sort of thing.  Knock on wood, we’re not too nervous about Alex physically.  He feeds well, he sleeps well, he smiles, he makes eye contact, and he’s picking weight up.  Our pediatricians haven’t noticed anything at this point either.
  • The next step after the evaluation (and I’m told that we’ll actually do this the same night of the evaluation which may be because Alex’s should be pretty easy) is to formulate a starting plan.  That’s probably where we’ll say “speech therapy, Buffalo Hearing and Speech intervention program,” etc.  Shannon and I are looking forward to this piece, because that’s going to be the blueprint for Alex’s immediate future.  A large component of that is going to be having a specialist go to our house and give us some guidance on how to best interact with Alex.  Really looking forward to soaking all of that up!
  • Once the formal evaluation write-up gets to the Early Intervention folks, the plan essentially activates, gets funded, and away we go.

I had mixed feelings about the meeting itself – this is still so new and fresh that it was tough to realize that this was real – my kid’s in early intervention.  At the same time, it’s somewhat empowering.  The coordinator I spoke with was very sweet and supportive, and she emphasized a few times that Shannon and I will be in the driver’s seat.  We’re going to have a team of people working toward getting Alex whatever sort of help we can, and we can change the plan as we go along and learn more about our little dude.  We’ve got ’em for three years.

Another thing that I was happy to learn is that we’re probably less than a month away from getting Alex hearing aids.  Now, we still don’t know if Alex has auditory neuropathy or not, which comes into play.  If he DOES have it, then it’s likely that hearing aids wouldn’t do anything for him except for make white noise sound louder.  However, if he doesn’t, we could expect that Alex would at least be able to hear a little bit more than what he can do now.

A recurring vision that I’ve had is that I’m sitting in my chair in our family room, looking at Alex’s back (he’s facing the TV, maybe playing with some toys or his sister).  I call his name or make a loud sound and he turns around.  That sounds incredible to me right now.  We don’t have any sort of high hopes for the hearing aids, but any possibility that they might be able to help Alex at all feels like major progress.

We’ve been diagnosing and testing for what seems like forever.  Though it feels like we still don’t have any traction walking down any particular path, it feels good that we’re going to at least start walking.

Other notes… the hospital called our ENT and stated that they didn’t want to try to get an MRI performed on Alex until he hits six months.  Though that’s no surprise and didn’t feel like any sort of major setback, it’s somewhat disappointing that we won’t know if we have the option of cochlear implants for that period of time.

We still don’t know what’s up with the auditory neuropathy.  We have another appointment setup with Buffalo Hearing and Speech and we’re somewhat assuming that they’ll perform yet another ABR to look specifically for AN, but who knows.  If nothing else, that appointment should be informative so we can learn a bit more about their two programs (one that’s based around using hearing technology to boost listening / speech skills for mainstreaming and one that’s more of an ASL route but uses total communication that would include any hearing capabilities).

I’m tempted to write about how the family has been doing in general, which is definitely BETTER, but I’ll save that for a later post.

Some Clarification

Posted by

0

I’ve gotten a few notes from my past few posts, and just wanted to take a stab at clearing the air quickly.

At this point, what I’m writing is very emotionally charged.  I know that I’m saying dark things, but the reason I’m doing this is to document the journey I’m on and being real about it.  I mean no offense to anyone involved in the Deaf community, and I understand their perspective that there’s nothing wrong with them that needs to be fixed, they’re just different.  I find that perspective to be very reassuring.  I apologize to anyone who takes offense at my visceral reactions to what’s going on with Alex and would hope that they would understand that all rationale is generally out the door when you’re talking about your children, but again – my goal is to document the journey, and that will almost certainly involve change.  I want it all here as an honest representation of that journey.  I initially thought I would write just a private journal, but decided to publish it in the hopes that, along the way, it might help someone else in some capacity or let our friends and family know what’s going on and how we’re doing.

On another note, if I seem gung-ho on cochlear implants at this point, it’s because they represent the ability for myself and Shannon, as parents, to give our child all that we can.  We know that it might not work.  We know that if it does, it’s not a “cure” for his hearing loss.   We’re not squarely on that path yet.  Alex’s viability as well as the testing that can be performed to see how well he might take to them will absolutely be major considerations, and we’ve been very happy with what we’ve heard about the Total Communication / ASL Early Intervention route as well.  Our happiness or love for our child doesn’t hinge on him getting cochlear implants, just as we know that his love for life and identity aren’t dependent on them (or any other medical device) either.

I hope this gives some clarification on where I’m coming from.  So far, the story has been written in a pretty bleak way, but that’s because this is all still very fresh for me.  Believe me when I say that Shannon and I have had many conversations about how we can’t wait to look back on this period and roll our eyes at ourselves for worrying so much about our beautiful son.

Introduction, Part Three

Posted by

5

Continuing…

After the ABR where we discovered that Alex was functionally deaf, Shannon and I were obviously distraught to the core.  His “out of the box” hearing was practically non-existent.

One of the last kindnesses the audiologist gave us was to refer us to a new ENT whom she referred to as “THE guy for cochlear implants around here.”  She even called their office for us on the spot and arranged an appointment; she got us in something like four days later, which is apparently miraculous because this doctor is very sought after.

She also gave us a quick background on our two basic options that we’d have at this point – we could try for a listening / speech approach, or we could go the ASL route.  No decisions were or have been made at this point because we don’t have enough information to make an informed choice, but I’d be lying if I said that we didn’t ask more questions about the hearing / speech approach.  Apparently most of the kids that go through that program have great success in mainstreaming (that is, going to typical schools and basically being brought up to be a part of the hearing world), which was good to know.

Our nights were awful.  One thing that was particularly difficult was falling asleep, because the silence beforehand gives plenty of room for the mind to race.  To make things worse, Alex was still waking up once or twice a night to feed, so we had to go through the process multiple times per night.  Each time we woke up we realized that it still wasn’t just a nightmare that we were waking up from; our child was still deaf.

During the days, much research was done around cochlear implants, including how well they work, how they do with music, what sort of future-tech was coming up, etc.  Again, it was all a compromise, so it was all very difficult to feel positive about.

The day of our appointment with the ENT rolled around.  Our new doctor was definitely an improvement from the last guy – our audiologist had given us a heads-up that this would just be a very quick and cursory check, but our doctor answered almost every question we had accumulated at that point.  It was nice to be able to ask an actual professional questions and get real-world answers rather than reading clinical statistics from Google Scholar.  He seemed rather matter-of-fact about going with cochlears at that point, and most importantly, he said that if that’s the approach we were to take, he’d want to do so as early as possible.  The earliest he had implanted was eight months, but typically he could get them done by nine months.  The FDA currently recommends waiting until one year despite all of the studies that scream “THE EARLIER THE BETTER!”, but the doctor ensured us that he could petition and we’d have a decent chance of pushing it through.

Throughout the discussion, the doctor brought up the term “auditory neuropathy.”  I didn’t think anything of it at the time because it basically sounded like the medical term for “deaf” or “hearing damage brought on by damaged nerves.”  On our way out, the doctor mentioned that he wanted to line up an MRI if possible so he could get a better idea of what was going on with Alex’s ears.  A challenge with this is that it takes something to the order of 40 minutes to complete and requires the subject to stay very still.  No easy task with a squirming infant.  Typically, children are anesthetized, but he wasn’t sure if we could do it with Alex being this young.  Nevertheless, they would follow up and see what the MRI folks would recommend (we haven’t heard back from them yet, but I’ll share that info here when we do).

Later that night, we had our first social dinner outing since having Alex with Shannon’s best friend and her fiancee.  Though we weren’t sure if we would really be able to enjoy ourselves, it proved to be extremely therapeutic.  They asked questions about it.  They offered encouraging words.  They didn’t try changing the subject.  They obviously were interested in what was going on with Alex as well as our well-being.  Basically, it was fantastic, and it’s yet another reason that I appreciate that we have the two of them in our lives.  Yes, some alcohol might have helped as well, but it was great to feel somewhat normal for a few hours.

Again, this good feeling would be unfortunately short-lived.

Shannon brought up that the term “auditory neuropathy” sounded strange when the doctor had brought it up.  I told her my initial thought on it, which was that it was just a fancy term for “deaf.”  We went to sleep for the night.  Alex woke up at around 3:00 in the morning to be fed.  During that time, Shannon and I started looking up the actual term “auditory neuropathy,” which was also present on the ABR report we had received that day.

Our third drop straight into deep depression commenced.

Auditory neuropathy, as it turns out, is a SPECIAL type of deafness (you have to win the lottery to get this, it’s something like 1 in every 100,000 children will have it) with a few terrifying characteristics.

  1. Cochlear implants don’t always work with it, or they don’t work as well.
  2. Hearing aids flat-out won’t do anything for it except for rare cases.  Therefore, putting hearing aids on Alex prior to getting cochlear implants (if we were to go that route) would likely do absolutely nothing for him.
  3. It’s something that’s relatively “new” in terms of being diagnosed, so there isn’t a dearth of experience in treating it.
  4. Worst of all – auditory neuropathy is often accompanied with other issues.

That was the end of our sleep for that night.  We had gone from adjusting to a perfectly healthy baby to a baby with moderate hearing loss to a baby with profound hearing loss to, now, a baby who would potentially not even benefit from cochlear implants AND who was more at risk for having additional health issues.

The latest bit hit us the hardest.  This might be because we’d already endured the previous two hits, so we were already raw.  There was a lot of pleading for the evil to cease.  “Please stop.  That’s enough.  We can’t take any more.”  We began to make peace and accept that we could have a child who would simply not have hearing, and potentially have worse things coming on the horizon.  We’re still trying to make peace with this possibility.

Two days later, we went to Shannon’s mom’s house to spend the day.  It’s always been a boost to the soul to visit for a few hours – Taylor and Alex’s grammy and grampa love taking care of them and spoiling us.  It’s also nice to get out of the house occasionally, especially when you’re sending so many hours writhing in depression within it.  Shannon and I had a good discussion on the way over (as we usually do) about what sort of GOOD things the future might hold, and how that rational thought that we’d deal with whatever came our way and adjust our lives accordingly was worth holding on to even as we were bottoming out.

Upon arriving at the house, the kids were immediately spoiled.  The TV was tuned to Disney Junior, which contains most of Taylor’s favorite TV shows.  At one point, there was a show called “Little Einsteins” on.  It’s basically an educational cartoon that places a lot of emphasis on a few bits of classical music every episode.  While it was on, I was holding Alex, who was resting in my arms, looking innocent and beautiful.  Every time they played a little musical hook was like taking a knife to the heart.  He couldn’t hear this.  Even if he had cochlear implants, he probably wouldn’t hear it with the same fidelity that we could.  I broke down and cried silently on the couch.  I even received the added bonus of feeling guilty about doing it because I know that Shannon’s mom could probably see me, and I highly doubt that made her feel any better.  Certainly one of the lowest emotional moments I had had so far.  In my life.

I think that by this point I had lost something to the tune of 15 pounds in just over a week.

The following day we had another ABR with the hospital we had performed the first one with.  The main objective of this particular ABR was to get a good measurement of Alex’s left ear now that Buffalo Hearing and Speech had gotten a solid reading out of Alex’s right.  I held Alex again while Shannon waited in the hospital waiting room.  Before the audiologist began the test, I gave her an update (suspected auditory neuropathy, profound hearing loss), mostly to encourage her to tell me what she was doing as she went along without worrying that she was going to casually deliver horrific news to a dad who thought everything was AOK.

After about an hour’s worth of testing, we received some interesting news – she didn’t see any sign of auditory neuropathy in Alex’s left ear.  That was somewhat unbelievable, considering that auditory neuropathy is almost ALWAYS present in both ears.  She explained something about a wave V (I’ll try to get more detail on this as it unfolds in case it helps anyone else) and how it wasn’t exhibiting signs of neuropathy.  It might’ve been because it was smooth?  I’ll clarify later.  My hope didn’t skyrocket (or, at least, I won’t let myself admit it), but it was a potential win.  I eagerly asked her if she could re-test Alex’s right ear to scan solely for auditory neuropathy.  She agreed.  Flipping Alex over woke him up, but luckily I was able to get him back down again after about twenty minutes.

She couldn’t find any signs of neuropathy again.

The testing concluded and Shannon was brought into the room to discuss the results (I specifically asked for this to make sure she could hear everything the audiologist had to say as well as have the opportunity to ask questions).  She re-iterated that she couldn’t find any signs of AN, but she also didn’t have the report from Buffalo Hearing and Speech that might’ve shed some more light on what THEY had seen.  Again, I tried not to get my hopes up too much.  We had been told that Buffalo Hearing and Speech had the latest and greatest equipment, so maybe they were looking for something different than the hospital was.  Our souls had already been squashed three times in the past two weeks, so this the prospect of any hope just felt like a cruel setup.

The audiologist went on to answer all of our myriad questions.  She had previously been involved with the early intervention program, so we got to find out a lot of great information about the two tracks – one for auditory / verbal, one for ASL.  We discovered that the ASL track was actually more based on total communication (so ASL, speech, hearing, lip-reading, everything available) which made us feel better about that program.  It was pretty informative.  She was also kind enough to give us the opportunity to email her the ABR report stating that Alex had auditory neuropathy so that she could take a look, and she promised to get back to us with her input.  She did so a few days later and stated that she didn’t read anything on the report that would make her back her opinion out that Alex was free and clear of AN.

At this point, I think we’re basically caught up in terms of diagnosis.  We don’t know if Alex has AN or not.  Over the past few days I’ll admit that I have some hope that he doesn’t have AN on the basis of the latest ABR as well as a few things that we thought were odd that the audiologist agreed with – namely, that his OAE test was always coming back as negative.  With AN, an OAE typically shows as normal for a period of time and then goes to abnormal, but that takes a lot longer than the ten weeks that Alex had been around for.  Typing this, I can feel the letdown that I’m already setting myself for, but I guess we’ll just call it cautious optimism.

We haven’t heard back from our doctor yet regarding Alex getting an MRI (step one in determining whether cochlear implants would work for him).  We have our first early intervention meeting scheduled this week, but that’s just going to be boilerplate.

At least we’re moving.

Introduction, Part Two

Posted by

7

I’ve struggled a bit to figure out how to keep this from just becoming a babbling stream of consciousness for the sake of keeping things organized and helpful.  I literally have four other posts that I’ve started and not finished for various reasons; regardless, it’s probably best to keep catching up with Alex’s story.

Where we last left off, Shannon and I had found out that Alex had some degree of hearing loss.  We had no idea what the extent of it was at this point.  When we got home, we immediately took to Google and started investigating hearing aids and feeling awful.  Some hearing loss might not sound bad, but understand – our child would now depend on hearing aids for the rest of his life.  And if you know anything about hearing aids, then you know that they’re far from perfect.  Unfortunately, hearing issues can’t be boiled down to “just amplify it!”  It doesn’t work that way.  They contain speech processors, noise reducers, different programs for different sound environments, etc.  Basically – Alex’s hearing would not be able to fixed or brought back up to 100%, at least using today’s hearing aids.  Everything from here out would be a compromise for our boy.

Then, of course, there’s the visual.  He would always be wearing these.  As a guy, he doesn’t have the same benefit as most ladies do in terms of being able to grow his hair out.  Well, of course he COULD, but let’s be real.  Only a select few guys can do that.  Dark thought – he would never be able to approach a girl at a bar and stand on the same footing as another guy who doesn’t have hearing aids.  There’s nothing cruel about that in itself; we’re biologically wired to look for attractive partners who don’t have any potential issues that could be passed to their children.  But as a parent?  It’s a fucked up thought to have.  And I knew it was a fucked up thought to have, so I felt guilty about it.  The dark thought -> guilt -> depression cycle has been a common theme through much of this.

We felt terrible, had trouble sleeping, felt victimized.  It might have been the day after we took the test that we decided to immediately get moving as quickly as possible and call up an ENT specialist.  I’ve worked in the healthcare system.  I know how inefficient and slow it is.  We also scheduled a follow-up ABR with the hospital to get a better diagnosis of what sort of loss we were actually dealing with.  The closest we could get was something like three weeks away.

And just a quick note on those three weeks.  Three weeks is a very.  Long.  Time.  Especially when you’re talking about something as emotionally charged about this.  It’s three weeks of pure uncertainty.  Gives the mind plenty of time to conjure up stressful visions.

Getting back on track – shortly after the initial news, we hosted Halloween at our house with my parents, some of my friends, and Shannon’s family.  I asked my dad (who wears hearing aids) many questions, to which he had many rationally reassuring things to say.  I qualify that with “rationally” because at this stage of grief, nothing rational really helps.  At the end of the day, it’s still a compromise regarding something you would NEVER, EVER, want to do so on – the welfare of your kids.  Speaking with my dad, though, was very helpful.  He’s someone who’s living in the world of less-than-perfect hearing, so to hear his perspective was real, and hopeful.  Much was said about how far the technology has come along since he started wearing hearing aids.

After many tears and heartaches, Shannon and I came to a base form of acceptance regarding Alex’s hearing loss.  Hearing aids wouldn’t be too bad.  There’s some pretty crazy stuff out there for hearing aids, including aids that fit directly into the ear canal.  No one would have to see them down the road, so Alex wouldn’t have to deal with any sort of obvious social stigma from looking slightly different.

Just as long as it isn’t something like, oh, say, cochlear implants… we’ll be alright.

Shortly after Halloween, we had our appointment with the ENT.  Nice building, but the guy sucked.  He wouldn’t look us in the eye.  He didn’t introduce himself when he walked in.  He talked over my questions (Shannon later told me that she knew that I was getting increasingly angry).  He spent much of our time together talking about late night hearing aid infomercials.  Worst of all, though, is that he thought we had come to him a little bit too early, and that typically they don’t engage until the patient is about six months old.  Nope.  Everything we had read up to this point was that getting your baby as much hearing help as possible, as early as possible, is paramount.  As if that didn’t seal the deal that this was going to be a one-appointment thing, his detached manner really drove it home.  It’s amazing to me that someone can get their doctorate and have such a shitty bedside manner.  I didn’t need the guy to give me some hugely compassionate speech or anything and I get that not all doctors are psychiatrists, but this guy was just completely disinterested.  We weren’t there to talk about subjects that interested his whim, we were there to do the best thing that we could for OUR CHILD, which most parents would probably agree is probably the most important part of their lives.  Before we had left the room I was relatively certain that Shannon and I had already telepathically agreed to never see this guy again.

There were two good things that came out of this appointment, however.  One – he looked at the results of the wonky ABR we had taken and made some mention of how it looked like it was mild-moderate or something to that tune.  For those who haven’t done eighty hours of research on this, mild-moderate is basically “get some hearing aids to help you hear optimally, but you’ll be fine” territory.  That was reassuring.  The other positive was that he recommended that we arrange an appointment with Buffalo Hearing and Speech, who have the best equipment, etc.  On our way out of the office the helpful secretary got us an appointment with them that fell before our follow-up ABR with the hospital, so speeding that along was appreciated.

The time leading up to that next ABR was relatively peaceful.  Shannon and I still discussed Alex’s hearing loss at length, but at this point we had a doctor implying that this didn’t look like any major sort of loss.  A hugely important calming factor that was introduced here was Shannon’s best friend.  She wears hearing aids, but you truly wouldn’t know it.  It hasn’t slowed her down at all in terms of being social, intelligent, or generally awesome.  She’s been instrumental in bringing Shannon and I up from the dregs of depression, and for that I’ll always be very grateful to her.

The morning of the next ABR with Buffalo Hearing and Speech arrived.  I treated it as any other morning, so I got changed into my work clothes so I could head out afterward.  I would say that we were nervous, but shaking in our boots, encouraged by the “mild-moderate” bit from the doctor as well as the fact that we still thought that Alex was reacting to some sounds.  Shannon said that she was hoping for just that mild-moderate loss.  I thought I would be more conservative and go with expecting moderate-severe (which is at the upper end of hearing aids getting the job done well).  Something that sticks out to me now as I write this is that as we pulled up to the building and turned the car off, I had this feeling that the next time I’d walk out of the building in front of me, my life would be completely changed.

We had a wonderful and compassionate audiologist who performed the ABR.  She explained what she was about to test.  Shannon and I explained that we felt that Alex had some hearing loss at this point just so she knew she probably wouldn’t be dropping any bombs on us, we went through the family history question (we have none), and then we got started.  I held Alex this time around to take some of the load off of Shannon.  Alex was VERY sleepy at this point, so we were sure we’d get solid test results back this time.  To setup an ABR, a small tube is inserted into the ear, which is basically the speaker.  It goes into the ear rather deeply.  Electrodes are then placed at various spots of the head to measure brainwave activity.  The idea is that if you can correlate the sound coming out of the speaker to the brainwaves, you know that the person is hearing it.  Again, everything seemed to start off fine, and stayed that way for about twenty minutes.  By “fine,” I mean the audiologist wasn’t really making any notes or saying anything was up.  I couldn’t see the results of her testing from where I was sitting, though.  After those twenty minutes, though, I could hear one of the sounds that was being played into Alex’s ear.  And he didn’t move.  My stomach dropped.  Again, these tubes were placed relatively far in his ear… and I could hear what they were trying to get him to react to.  He slept like it was nothing.  I held on to some hope, though.  Maybe the speaker was firing backward and out of his ear for some strange test.  Maybe it wasn’t abnormal to be able to hear that.  Maybe his brain registered it even though I didn’t feel him move.

At some point Shannon stepped out of the room to call my dad, who was mercifully watching Taylor while we were at the test.  During that window, the audiologist wanted to test the other ear.  I asked her how everything looked.  She very gently, but directly, stated that we were in the profound hearing loss territory.  Or in layman’s terms – he’s straight-up deaf in that ear.  I went back to the feeling of grief when we first learned that Alex had hearing loss.  It wasn’t quite as shocking this time, but that was probably because we had immersed ourselves in the world of hearing loss, so this sort of diagnosis was more like a worst-case scenario vs. what had initially felt like an impossibility.  When Shannon walked back into the room, I told her, because I felt she deserved to know it immediately.  The look on her face made it apparent she was immediately back to grieving as well.

Testing on the other ear was indeterminate because Alex woke up and started wiggling.  At that point, it didn’t seem to matter, though.  We had gone from light hearing loss to DEAF.  We did learn that his hearing loss in the other ear wasn’t quite as awful, but it was still very bad.  No consolation there.  I asked the audiologist “So we’re now in cochlear implant territory, aren’t we?”  She sullenly nodded.  During the next twenty minutes, we were introduced to what was going to be our world.  Early intervention.  Special schooling.  Therapies.  Appointments.  Mercifully, the audiologist who we were dealing with was very sweet.  She told us many encouraging things, including that most of the kids that went through the program were successfully mainstreamed.  That was important, as it helped to frame early intervention as a lot of up-front work to help your child go through life otherwise “normally” afterward.

Of course, none of that helped the complete defeat that we felt again.  I called in sick to work because there was no way I would’ve been able to cope with it at that point.  More tears and mourning.  The most evil part of depression, in my mind, is that when you’re experiencing it, it truly feels like it is never going to end.  Welcome to your new existence.

Still not completely caught up, but it’s a good stopping point…

Why did I start this blog?

Posted by

2

I’m somewhat of a weird guy.  When I have something that’s weighing extremely heavily on my mind, I’ll actually have verbal conversations by myself.  It’s one of my coping mechanisms. So far…

I’ve had these conversations when I’m watching Alex by myself.  One of the earlier ones involved me apologizing to his tear-blurred image for an hour.

I’ve had these conversations when I’m driving Taylor to daycare (although I’m usually talking TO her, albeit at an adult level).  Usually these are about how lucky he is to have such an awesome big sister and how much she’ll help him, and how much I love her.

I’ve had these conversations when I’m driving by myself, often about the future, really functional kind of stuff that brings me hope as a technologist / futurist.

The self-conversations, while admittedly creepy, have always been at least somewhat helpful to me as a form of bloodletting.  It simply feels more therapeutic than leaving everything inside.

One of my wife Shannon’s many inspirations has been her love for Blogging – she runs a popular site over at sittinginatree-blog.com where she’s posted about everyday things dating back to before we were married.  It’s evolved into a family blog which I love reading.  I check her site multiple times in the day to see if she’s posted anything.  Her writing always makes me smile.

Anyhow, while coping, I considered that I could put all of that internalization to some good use, by creating a blog and posting to it.  The internet, if you’re looking for info on something emotionally charged, tends to be both amazing and cruel – look long enough and you’ll find your worst fears or your most naive hopes.  While scouring the internet for information on Alex’s hearing loss, the most comforting information so far has come from people who actually lived through such an event and whom took the time to write about their experiences.  As Shannon and I have been going through this process of grief and loss, I’ve rationalized to myself that no matter how bad I feel now, I will eventually make peace with what is happening, a new normal will be established, we will laugh again, and most importantly – we will love our son for all that he is AND all that he isn’t.

While I’m actually going through this whole adjustment, I thought it would be therapeutic both for myself to write it and, potentially, for others to read it.  A detailed journey, if I keep up the writing.  My greatest ambition outside of my own selfish reasons for this blog is to potentially be a source of comfort for the parents who are going or will go through the same thing we did.

To that end, I intend on holding little back.  I’ve had some seriously dark thoughts at this point, and I’m only a few weeks into the process at this point.  If this is to be as helpful as possible (including to myself), I think it also needs to be as honest and real as possible.  I realize that members of the Deaf community may read this and be appalled at the emotions and feelings of loss that I’m having right now, but that’s the truth of the thing for me.  Going back to the “Greatest aspiration” bit, I believe if I had access to a detailed blog that went into all of the feelings in detail, good or bad, it would have been uplifting to see what one would hope would be emotional progress toward enjoying life and the blessing we have received in Alex.

I KNOW that my child is going to amaze me already, but I don’t FEEL it yet.  From the real-world stories I’ve read from actual parents, none of these people are living lives as sad as ours feel right now, regardless of their outcomes.  Personally, that’s a source of inspiration and it’s something to hope for, but acknowledging the raw and intense feelings that come with this is keeping it real.