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.

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Some more random tidbits

A lot has happened lately, so this is probably a good time to write about some of the stuff that’s fallen between the cracks.

Alex is still moving along at a good clip with his physical development. We were worried that he was developing a flat head, but he’s been doing much better with sitting up with a little bit of help and we almost never have him flat against the floor anymore. None of that would really be an actual health concern anyhow unless it got REALLY bad, but it’s still a mini-win for us that the flat spot is going away.

Speaking of physical therapy, Alex had another PT appointment last night. Not way too much to say there – he’s still on track for his age, and it was reiterated to us again that if Alex was to be evaluated today, he likely wouldn’t be a candidate for PT services. We still have a list of things to work on to help ensure that he hits his milestones for next months, but there’s nothing we really have to get him caught up on. The only thing that the therapist noted was that he still has a little bit of a side preference when it comes to leaning his head, so she encouraged us to hold Alex on his side so that the opposite side of his head is propped up a little bit higher to stretch that neck muscle a bit. No big deal, though.

His eye contact is fantastic. One of his favorite games to play is to stare up at one of us. When we make eye contact back (especially if we make a silly face at him), it’s almost a guaranteed smile. Eye contact is a good sign that he doesn’t have some other issues that we’re obviously hoping to avoid. Our speech therapist even noted that his eye contact is great and that he reacts very well to his environment. Great, and reassuring that we haven’t seen any signs of anything else coming.

We still haven’t gotten the results of Alex’s genetics testing. That should be coming this week. It’s very likely we won’t learn anything from it at all, except for what it possibly isn’t. Because of that, it’s nice to have our therapists telling us that they aren’t seeing anything else going on, at least yet. It makes me nervous to think about. I have a bad feeling we’ll get back some sort of result that’s full of “this MIGHT happen, and this MIGHT happen…” sort of stuff that will just make us worry. But as Shannon often tells me, it’s important that we stay in front of as much as we can, and she’s right.

On the techy front, I’ve been excited about a recent MIT development that’s resulted in a CI proof of concept that’s completely internal. It’s a pretty slick design – the microphone resides in the middle ear, which effectively means that the acoustics of the users ears come into play, which is a little more natural. Obviously the coolest things about this design are really the invisible equipment and not having to worry about any of the downsides of that equipment. I think the big downsides to it would be that it would require a surgery to upgrade the hardware, though. Their design still uses an electrode to stimulate the cochlea instead of something like infrared (tens of channels of sound vs. HUNDREDS). That tech is a ways off, though, but the fact that they have a newer internal implant is awesome. I’m hoping that the model that we see for the internal implants involves a processor that’s still external, but much smaller than current processors (something like this, but preferably even smaller). Cochlear has an internal CI that’s been in testing for the better part of ten years now, and actually has two modes of operation – one that works completely using internal components, and one that works in conjunction with external processors. The former is the better sound, but the idea is that it isn’t required to be able to hear anything. I think that’s a great model to allow for upgrades as we go along without requiring surgery. A happy medium will be found.

Outside of that wall of techno-babble, I’m really thrilled that so much work is going into bringing such amazing advances that Alex and others will hopefully be able to use. Just thinking about him not having to worry about batteries or swimming or roller coasters or worrying about getting double takes makes me smile.

I recently asked our CI board about if and when they introduced ASL to their children. There was definitely some spirited dialogue generated from it, because it’s such a huge part of the strategy a lot of these parents used for coping with their child’s deafness. The thread is up to about 50 responses right now, and they’re all great in that everyone’s story was basically one of success, and they were just sharing their particular recipes. A lot of really interesting points were made both for and against teaching ASL prior to and during speech therapy. The one I found most convincing was that some children found it easier to use spoken language because they were already familiar with the concept of the words that they had learned from ASL. No one stated that ASL got in the way, but obviously it’s still a small-ish sample size. On the other side of the coin, there were many parents who posted that their children were oral-only and that their kids had no interest with learning sign language after their therapy. Cool to see that level of confidence placed in hearing / oral skills as the sole means of communication (minus writing and finger-pointing, of course!).

I think what I got out of the discussion is that there isn’t a clear-cut right or wrong answer, but it looks like ASL wouldn’t really get in the way of verbal development. I don’t think our current strategy of introducing ASL during or after Alex’s therapy is really going to change, but now I think the reasoning for that is going to be more about not inundating the guy with therapy and new things to learn instead of ASL impeding his verbal skills.  It’s still a tool that I still want him to have, though.

I think that about covers it! It’s been a busy week and we’re still figuring out Alex’s hearing aids, but I’m happy with the progress that we’re making.

I was telling Shannon that I have this future image of my head of having some of Alex’s buddies from his oral school come over to watch a movie in our home theater that we’re going to eventually put together (closed captioning, of course!), spoiling them with pizza and pop, and generally running around like the normal kids they truly were. Their parents could be upstairs with us exchanging our war stories of our respective journeys, how much we worried, how much work it all was. It’s a simple little scenario, but it gives me a lot of hope that everything will end up alright and that we’re just in a really tough stretch right now, just gotta keep plugging away.

More Techy Stuff.

I’ve already said a few times that I’m a big tech-head and that I think it’s going to be very natural for me to spend a lot of time researching the myriad stuff going down the pipe for hearing loss, so if you’re not into that, you won’t dig this. I like talking about all of the possibilities that these developments could represent for Alex, though, since a lot of it is what personally keeps me sane when I think about the stuff Alex won’t be able to experience or the stuff he’ll HAVE to deal with using today’s tools.

CES (Consumer Electronics Show) is a big annual show where all of the gadget companies show off their latest and greatest to drum up hype. It’s gotten large enough that the heavy hitters at the show get coverage from major news outlets. The 2014 convention just wrapped up, and among some nerdy things that I can’t wait to get my hands on, one of the larger themes of the products there was wearable technology, primarily in the form of smart watches (you’ll know all about them when Apple releases theirs). There were a few VR helmets on display and a few Google-Glass like devices too.

There are a few things that I’m really digging up about the push of wearable technology in relation to Alex’s hearing loss and his potential usage of assistive technology.

  1. It signifies a big push and vote of confidence from the companies involved that miniaturization of high-powered devices is at a point where it will be accepted by mainstream customers, and that further miniaturization will continue to be chased down. This will translate to more readily available and powerful hardware that can be used in the assistive devices Alex might be able to take advantage of. If we’re specifically talking about cochlear implants, that’s going to mean smaller BTE (Behind The Ear) pieces, and later on, components that are small enough to be completely implanted while still being very powerful. The same idea would apply to microphones.
  2. Wearable technology might make body-networking more popular, which will lead to improvements. Body networking is basically a wireless network that uses your body as a physical medium instead of cables. It’s superior to wireless networking because it’s more secure (someone has to be touching you in order to be on your network) while carrying a more reliable signal than wireless (not as prown to interference). This could potentially lead to doing away with the conspicuous wire and magnet that connect cochlear implants to the BTE speech processor (my biggest qualm with the appearance of the tech).
  3. The proliferation of body-worn tech might get to the point where it’s very common place, making cochlear implants less socially strange at a general level. This one isn’t way too important to me, but I’ve read some sad-ish stories of parents who can see people staring at their children or dealing with rude questions. I’m thinking that miniaturization will play a much larger role in allowing users of CIs or powerful hearing aids to not get strange looks because of their hardware, but it’s something.
  4. Better, smaller batteries OR body-powered devices. Cell phones have driven compact battery performance through the roof over the past ten years, especially since the iPhone popularized the “your whole phone is a touchscreen” trend. It’s funny to think about now, but I remember reading all of the skepticism on gadget forums about how the iPhone would be a certain flop because its battery performance MUST be garbage, and that was only seven years ago. With wearable tech, development of technology that can charge off of a person’s body (through heat, kinetic energy, etc) becomes a more desireable feature. Obviously for hearing tech, this equates to smaller devices with smaller, longer-lasting, or even non-existent batteries.

I’m excited to see this stuff start to take off. It’s clearly in its infancy right now, but the qualities of these devices are pretty similar with those of assistive hearing technologies. The more brainpower involved in these areas, the better for Alex.

So there’s CES, and that’s why I’m now particularly excited that devices like smart watches and fitness trackers and Google Glass are gaining momentum.

I have a few other things I’ve dug up about assistive tech, but I feel like I just wrote a boring enough wall of text above and I’d better stop here.

Putting my Money where My Mouth is

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.