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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The First Few Days Post-Activation

A few more notes about activation day…

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

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

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

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

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

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

 

Day 2

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

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

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

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

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

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

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

 

Day 3

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

 

 

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

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

A Little Optimism

This is a short one, but was ready for something a little more uplifting after my last entry.

I’ve spent a good chunk of my lunch break on Google looking up my favorite topic, hearing loss. Typically when I hunt around, it’s for news on the cochlear implant, but today I decided to look a little more broadly, so I searched around for “Deaf cure.”  I apologize in advance if you take personal offense to the combination of those two words, but it’s a popular search term. Also, you probably shouldn’t be reading this blog.

The results of the search were pretty cool. Just about everything I read was recent or semi-recent, and all projections were that a flat-out biological fix for dead hair cells, the most common cause for deafness by a landslide, were roughly ten or so years away. These weren’t written by over-optimistic bloggers like me, they were from real organizations and real studies performed that have traction.

This isn’t anything I’m going to cling to for dear life, but wow – if that comes to fruition and Alex has his biological hearing before he even hits his teens, no strings attached, no equipment… just an incredible thought. It sounds incredibly too good to be true, but it’s already happened before with Polio, measles, smallpox.

My favorite bit from a scientist who’s working at a solution using stem cells: “I do know when I see a baby right now who hasn’t any hearing whatsoever, probably in her lifetime, [she] will have regenerate therapy available for her.”

Yes, please.