Month: February 2014

Some more random tidbits

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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.

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Alex has Hearing Aids

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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.

Alex has a Surgery Date

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Last week I received a call from a phone number I didn’t recognize. Six months ago, my usual strategy was just to ignore all of them and listen to voicemail to make sure it wasn’t spam or recruiters, but I now get a little excited every time the phone rings since it might be Alex-related.

I was in the middle of a meeting when my phone lit up, but I ducked right out of the room to pick it up. It was Alex’s ENT, and they called to casually tell me that they had set a surgery date to install his cochlear implants, on June sixth. I was stunned. Our MRI to determine his eligibility for CIs isn’t going to happen until March, and our last appointment with our ENT was literally back in December with no other movement or communication really occuring since.

The person I was speaking to (who wasn’t the doctor) basically explained that they were basically just blocking off a slot of time for Alex’s surgery before the schedule became too hectic, and that a surgery was still completely contingent on the MRI results and another consult or two with the ENT. They were blocking off time for a roughly five hour bilateral surgery (i.e., they will install both of his implants at the same time, which is what we want), and potentially (only potentially!) an overnight stay at the same hospital Alex spent his NICU time at.

So even though I understand that from the ENT’s perspective that he’s just booking out time, it still has two key implications:

  1. The FDA recommendation of waiting until one year of age for implantation is going to either be a non-issue or that they feel that the case to make is going to be simple enough that it’s not worthy of holding his surgery up
  2. That Alex will be implanted just prior to his nine month birthday and likely activated just before the fourth of July, giving him almost three more months of hearing than those who wait for a year (a VERY SIGNIFICANT amount of time).

It was a fantastic call to get. We’ve built up so much momentum now between Alex’s early intervention team (of which the key members work at the oral school) and now his surgery that it’s going to be nothing short of a devastating blow if we come to find out that Alex won’t be able to get CIs due to anatomy, but at this point I think both Shannon and I are willing to take the risk that all of that momentum will be for nothing if it also means that we’re firing on all cylinders if we get the go-ahead.

I got off of the phone and immediately messaged Shannon with the news. She was just as thrilled as I was, if not more. As I was writing to her, it occurred to me that our little guy might be able to hear fireworks on the fourth of July this year, and that he might even squeeze a word or two out by Christmas of this year. Just incredible to think about.

We’re both very excited to have an actual target already. We weren’t anticipating on getting it for at least another month, and even then that we’d have to battle tooth and nail to get Alex implanted as early as possible. To see that they’ve even tentatively booked a surgery slot for us is a true relief.

First Appointments: Teacher of the Deaf / Speech Therapist

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I’m way behind on writing. In some ways, I think it’s a good thing, because I originally started this off as just a place to vent off steam. As things have sort of calmed down and we’re not in complete terror / panic / depression mode, I’ve had less steam to vent. Regardless, we’re still very busy, still a lot going on. I have a lot to write about, so maybe I’ll try out this blog scheduler thing and tear a few blogs out right now.

A few weeks back, we had our first appointments with two more of Alex’s early intervention people; his teacher of the deaf and speech therapist. They’ll both be working on different things with Alex, even though the gigs seem very similar.

Starting with the teacher of the deaf – as is with all of our early intervention team, all of Alex’s therapies will either be at our house or at his daycare. I had a LITTLE bit of trepidation over this one initially, partially because I wasn’t sure what to expect. I thought this might actually be a deaf adult who would teach us some of the ropes and maybe push ASL as the only thing Alex should be working on right now or something (if you don’t know, the existence of CIs is a source of great consternation among some of the more… passionate… members of the Deaf community). I didn’t want to feel pressured to go that particular way. At the time, I knew that my fears were probably ridiculous. Our Early Intervention coordinator knew what our goals were, knew we had already expressed great interest in the speech center’s oral-based program, and that any teacher who was too militant about pushing toward an ASL-only route would probably not jive well with us.

I’m happy to report that my trepidation was a complete waste of energy. As it turns out, our TOTD is actually the main teacher at the oral school we want to send Alex to! That’s huge, since Alex will be with her all the way up until kindergarten (assuming, as always, that he’s eligible for cochlear implants). She works with the kids in the program all of the time, she’s seen what works well and what doesn’t, so to have her involved early and often is huge.

As far as the content of the first meeting with her, it was sort of introductory boilerplate kind of stuff. She told us about her, what she did with the kids at school, schedules, and the general things we would work on. A lot of good info exchanged. Some of my favorite tidbits that came out of it:

  • The kids at the school get live music therapy once a week. Cool to see that the school doesn’t take the attitude of some of the more negative or older opinions of CIs in that their users can’t enjoy music.
  • Unlike Auditory Verbal Therapy, which seems to be the most common sort of therapy done with children who get implants to learn to communicate orally primarily, the system that her school uses doesn’t discourage lipreading as a tool. AVT has had a great amount of success (we see it on the Facebook parent board all the time), but I think lipreading is a tool. I don’t want Alex to lean on it too much, but if he uses it to get a little help in understanding what’s being said in loud environments, I’m all for it.
  • That said – the school DOES emphasize listening as much as possible. Our teacher told us that they regularly ensure that the kids are listening by calling their names and asking them questions when they’re not looking, for example.
  • She likes that Alex is in daycare for a few days a week – it’s good practice to listen in louder environments as well as good for socialization skills (some kids who are hard of hearing have obstacles here).

Overall, it was great meeting her. Shannon and I both liked what she had to say as well as her personality. It’s also great that we’ll be able to ask her any questions we might have about the oral school since she’s probably in the best position to answer.

Now for the speech therapist – I obviously had a clearer idea of what she’d be working on, so I wasn’t too worried about how that would go. Our first meeting with her was relatively uneventful. You could tell that she walked into the house assuming that we didn’t really know too much about CIs / hearing aids and their effects on speech. She came armed with a lot of knowledge on CIs, but we actually knew most of it already. It was no problem, of course – she probably got a good feel for what we know already. We’re really looking forward to working with her, of course. Oh – she’s ALSO on the staff of the oral school that we’re hoping Alex will attend. Past that, not way too much to say. Shannon and I both liked her as well. She was a bit more down-to-business, but I appreciate that quality for her gig. All-in-all, that was a pretty uneventful meeting, but those will get more interesting as some time goes on.

So there’s the team, all assembled. I like who we’ve got, and I feel that Alex is going to be in good hands.

Hearing Aid Update

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Things are thankfully starting to pick up again, in fact so quickly that I’ll have to divide up all of the updates into a few separate posts.

Alex still doesn’t have his hearing aids yet, but we aren’t stressing out quite as much about it anymore because we learned a bit more about the timeline. If Alex is eligible for CIs, we’re going to go for it. The FDA, however, has a requirement that any potential CI candidate use hearing aids for six months to ensure that they can’t get any benefit prior to implantation. When we met with our ENT a few months back, he told us that the earliest he had implanted was nine months. We’ve done enough research to know the importance of getting implanted as early as possible, so given that, we want to shoot for that nine month mark as long as Alex’s age doesn’t increase the risk of the surgery. Of course, he’s four and a half months old right now, so even if he had his hearing aids today, the earliest he’d be able to get implanted would be ten and a half months, with actual activation (when the CIs are actually turned on) not happening for three to four weeks after THAT. I get that that extra month and a half probably doesn’t sound like that much time, but it’s literally forty-five more days of hearing experience that Alex would miss out on when his brain is trying to soak up as much as possible. There’s also the angle that we’d be twiddling our thumbs around during those 45 days while absolutely nothing happened.  Shudder.

It turns out, however, that Alex’s profound hearing loss actually helps him out in this regard. We learned from Alex’s speech therapist (more to come on meeting her and Alex’s teacher of the deaf) that the six month time frame from the FDA can be easily petitioned, it isn’t hard-set, and it’s often shortened in cases such as Alex’s where it’s fairly obvious that hearing aids won’t get the job done. Phew. We’re still disappointed that Alex didn’t get his hearing aids earlier, but unless unless he isn’t eligible to receive them, cochlear implants are the end-game anyhow.

More on the hearing aids, though – we’ll (finally!) be receiving them in the next few weeks. The last holdup was getting approval from the Early Intervention program (so really, the county) to pay for them. He’ll need to get re-fitted since his last fitting was back in December and he’s a fast-growing baby, but we’re tackling that this week.

I have some mixed feelings on putting the hearing aids onto Alex. There’s a part of me that’s going to hate putting them on him the first time, because I think in some way his deafness will become all the more real. I’m naturally biased, but I think the kid’s adorable. It sucks to know that he’s going to have to wear these, and further down the road, the even bulkier CIs. The techy side of me immediately wants to step in and say “It’s temporary, no sweat!” which makes me feel slightly better about the long-game, but until we have that fully-internal tech or that biological fix, he’s going to have that apparatus visible. It’s not fair to him.

Overwhelmingly, though, I’m excited to get started. We don’t anticipate that Alex will suddenly be able to pick up on more sound than he is now, but we’ll be making progress. He’ll be getting used to having stuff on his ears, we’ll be getting used to him having stuff on his ears and chasing it down / replacing it / playing with the settings / charging batteries etc. It’s step one to bringing some sound into his world, and I completely embrace that.

More to come on his hearing aids, and I still need to write about our initial appointments with Alex’s teacher of the deaf and speech therapist.