Alex has Hearing Aids

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.

First Appointments: Teacher of the Deaf / Speech Therapist

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.

First Genetics Appointment

First post in quite a while – it was a busy holiday. I’ll probably tackle some of my  thoughts / feelings during that period at some point soon, but we just got back from the genetics appointment so I thought I’d write about that now while it’s fresh.

The first thing that comes to mind is a blurb from our last audiology meeting that I don’t think I wrote out here. We were speaking with the audiologist and the director of the oral school and getting them caught up with what other people we had talked to and where Alex was with regard to all of his other appointments. When we told them that one of the next things coming up was a genetic test, they were both somewhat surprised – apparently it’s pretty rare that their kids’ parents have that testing done, which in turn surprised me. I certainly understand the whole “ignorance is bliss” approach, but don’t you still do it so that you can get in front of anything else that might be coming, or even better, that you could get some verification that nothing else WOULD be coming?

Anyhow – the director cited a pretty wild figure, something to the tune that she only knows of three or four kids who went through her program who had the testing done, so they’ll be interested to hear how the experience goes for us. We’ll certainly share that information with them.

The appointment itself was pretty standard stuff. Nurse comes and gets us, takes Alex’s height, weight, and head measurements. Another person (I’m not sure what her title was) then came in and asked us to reiterate what was going on with Alex at a high level to make sure that it jived with the notes that she already had. Shannon did so. She then went through the following questions for both Shannon and I:

  • How old are you?
  • Do you have any medical concerns?
  • Do you have siblings? Do they have any medical concerns? What’s their age?
  • Do you have living parents? Do they have any medical concerns? What’s their age?

Obviously she was looking to see if there was an obvious genetic history to trace Alex’s issue to. She went over dominant and recessive genes quickly and explained to us that there could be multiple steps in the analysis. The first thing they want to look for is Connexin 26. This gene accounts for half of all cases of genetic deafness. The “good” thing about this gene is that deafness is basically the only issue associated with it, so if we happen to fall into that category, we’ll get some verification that Alex’s deafness isn’t symptomatic of something larger.

Our next step is to have Alex get a blood draw from Quest Diagnostics. From there, a lab will test specifically for Connexin 26, and we’ll go from there. If the test comes back negative, another test will be done to look for other common genetic issues that have deafness as a symptom. It’s still quite possible that Alex’s deafness isn’t genetic, and if that’s the case, we’ll just get a bunch of negative tests.

A doctor was supposed to see us next, but it turned out that she had gotten caught up in the brutal weather we’ve had today in Buffalo and wouldn’t be in until later. That was somewhat of a downer since we were told that a lot of her training involves being able to visually detect issues, and it would’ve been nice to hear that he didn’t have anything visible going on. That said, Shannon and I have both stared at Alex plenty and haven’t really seen anything that would raise any flags, so we didn’t walk out of the office with our heads low.

I had to tell Shannon while we were waiting that I hated that we had to be doing any of this. Even though we’re busy and we’re ready to get to work and we know that the outlook could really be positive, just having to make Alex (and in this morning’s case, Taylor) go to these was a little sad, even though they both didn’t seem to mind one bit.

Next steps: Get Alex’s blood drawn, wait a few weeks for results to come back (they are ONLY testing for Connexin 26), and draw a plan of attack based on those results. We were told that we probably won’t have to come back into the office any time soon even if more testing is ordered, which is nice. Anything that helps to keep the appointments to a sane level is good.

Anyhow, a pretty straightforward appointment, but I thought I’d write it all out for anyone who’s interested in what one of these looks like.

A Relatively Quiet Week

There isn’t much going on in the way of news, but I felt like writing something out and keeping momentum. We don’t have any appointments this week! I was telling Shannon that I both like that and feel anxious about it. It’s nice to get a little bit of a break, but I also want to keep things moving. We’ve just about maxed out what we can do at this point, though – the genetics appointment is next week, early intervention is probably tearing through all sorts of paperwork and getting our therapy team lined up, and our ENT doesn’t have much for us until Alex can get his MRI done in March.

Despite the lack of appointments, we’ve been busy working with Alex on the minor issues that the physical therapist identified – neck strength and favoring his right side. Shannon and I have been very diligent on giving Alex plenty of tummy time, which has paid off well. Only a week later and he’s clearly MUCH better at getting his neck up nice and high, even if he’s still a little bit wobbly. We’ve also done a lot of work to encourage Alex to move his head to the left. That typically involves putting him on his side a bit so that gravity helps to push his head to the left (especially when sleeping) and putting him on the floor such that whatever action is occurring (Taylor playing with toys, the TV, mommy / daddy) is to his left. This has also paid off. He may still be favoring his right side, but at the very least it’s less noticeable at this point. Shannon and I hope to keep at it and see how much improvement we can get out of Alex before his PT appointment. Shannon has done some great research on head bobbling, and she’s identified that as an area we’ll still want to work on. According to what she’s seen, most kids’ heads generally stop bobbling by four months, so we only have a few weeks to get Alex to that point. I think that overall, we’re making great progress with working on Alex to address the issues the physical therapist brought up. It’s nice to see results!

A cool thing that I forgot to mention out of the audiology appointment we had last week was that part of the oral school’s “curriculum” includes a music class. I LOVED hearing about that. Shannon and I are both relatively musical people. Our favorite game of all time is probably Rock Band, we both like musicals, and we commonly have music playing in the background when we’re home. Taylor’s also quite the little singer.

Among the many things that hit me hard with Alex’s diagnosis was that he wouldn’t be able to appreciate that as much with us because he’d either be unassisted-deaf or be using cochlear implants (which currently aren’t known for being great with music). To hear that the school does any element of music therapy was wonderful, because it will be catered toward kids like Alex and it implies that, contrary to a lot of older stuff you’ll read on the internet, music isn’t useless noise to some of these kids. I can’t end this paragraph without also mentioning that there’s good stuff coming down the pipe for music comprehension through cochlear implants, too. I’m excited to know that Alex might be able to join his family of music appreciators. Shannon and I both want so much for him to enjoy Christmas music with the family next year.

On the topic of implants, I’ve still been doing a lot of research on implants so that if we’re eligible, we’ll know which direction we want to go and not feel rushed. At this point, I think we’d lean toward the Cochlear Nucleus 6 system. There are lots of good reviews from both adult users as well as parents of kids who use them that indicate that they sound “fuller” than previous models and that they also do wonderfully in noise compared to previous models. They’re also splash-proof! We like what we’re reading about them so far, and it helps that Cochlear owns something like 65% of the market. Technogeek note – they’re also the company who are known to be testing the fully-internal implant that I really, really want Alex to eventually get.

Despite all of the optimism and hope I think I’ve been showing here, it’s still really sad to know that our hopes, at least for the interim, will still involve Alex having a very obvious apparatus on his head. We’ll often read posts from parents on the boards discussing their strategies for dealing with when people ask about what the implants are (with varying degrees of politeness), and it just sucks to know that Alex will have to deal with that for an appreciable amount of time. The term “it’s just not fair” has been used quite a bit in our household. We’re still very grateful that the opportunity to experience sound and speech will be available to Alex, of course, but it sometimes pains me to look down at his perfect little head and know that, in some way, it’s going to be “spoiled.” When Alex gets his hearing aids, I’m sure that those shallow concerns will fade into the background if we know that he’s getting sound, but it’s sad to contemplate in the present.

What else… I think Shannon and I have found that it’s becoming much easier to talk about Alex’s hearing loss in a more matter-of-fact sort of manner without getting emotional about it. We went to a family party and Shannon brought the topic up very smoothly (everyone was probably wondering about it but afraid to ask), and we gave a general update regarding what we were hoping was going to be coming down the road. Being able to do this without getting measurably sad might not sound like much, but it’s a small victory and one that we’ll take.

Last interesting thing of note – Shannon has been visiting Alex at daycare during her lunch hours at work. It works out pretty well because her office is only a few minutes away from Alex’s daycare, it gets her some extra time with him that includes a little bit of physical therapy, and it also shows the good ladies who work there what sort of things we’re working on with Alex. During conversation with the teachers in Alex’s room, one of the teachers revealed that she has a daughter with hearing loss as well. Though hers was not enough to qualify for cochlear implants, she DID say that she has all kinds of experience dealing with hearing aids that have fallen out or are squealing, and so she can certainly help out when Alex gets his as well as be the go-to person for other teachers if Alex has any problems. Since we still haven’t found a nanny yet, that’s significantly comforting! One of our fears with leaving Alex in daycare is that we won’t be able to emphasize enough to the teachers how important it will be to keep his hearing aids / speech processors on or that they won’t know how to do it, so knowing that there’s a pro in the school really helps to alleviate that concern.

I think that about wraps it up for now – happy holidays!

Alex’s First Hearing Aid Fitting

We had our appointment at Buffalo Hearing and Speech this morning. I think that it actually went quite well.

The audiologist (who won’t be our long-term audiologist because she primarily does hearing aids) gave us a quick breakdown of what we were going to be doing, which included talking to the head of the oral school that we want to send Alex to if he’s eligible. Not only was she going to be available to answer our questions, but she was going to be there in person! This was a great kindness on the part of the audiologist as well as the administrator, because it was clearly going above and beyond what was required for that meeting. The second part of the appointment was to get Alex fitted for hearing aids.

The audiologist showed us the hearing aids that Alex would be using (she had some sample models), which was nice. They’re relatively small, certainly compared to the speech processors of the cochlear implants. We were then given the opportunity to pick out colors for the hearing aids. The audiologist made a great point, and that was that the beige color was a bit medicinal / clinical. We agreed and went for a silver color for our little guy.

We asked quite a few questions about what the hearing aids could do for Alex, and the answers we got were pretty uplifting. For hearing loss like Alex’s, the analogy was made that voices to him would sound something like what adults in Charlie Brown cartoons sound like – he will probably be able to make out vowels, but not much more. However, that’s still more than we were expecting, and we were told that it’s probably enough for him to be able to understand things like “mamama.” If he gets that sort of benefit on top of the basic things that we’re longing for (i.e., for him to look at us if we’re saying something loud, to startle, etc), it will really feel like he will have already begun his hearing journey. Hearing about the possibilities of what sort of help Alex can get in the near-term was probably my favorite part of the appointment. Yes, it’s going to be a monster to try to keep them on his head, but compared to him having NOTHING and feeling helpless about it, it’s just not a huge concern.

Anyhow – projections from the audiologist were about four or five weeks to get the hearing aids. That’s longer than what we were told by Early Intervention, but obviously they don’t know all of the nuances of the process. Between that and the benefits we might get out of the hearing aids, I’m not upset or annoyed at all, just excited to get them on Alex.

We then met with the administrator of the oral school, who was a pleasure to speak with. She answered all of our questions and gave us a little bit of background. Bulleted version:

  • We asked what the difference between Auditory Oral (what her school does) and Auditory Verbal (what all of the kids from the cochlear implant board are generally using) was. Her answer was that generally, the AO approach allows natural visual cues whereas the AV approach is more strict. There were a few other differences, but for the most part, they were roughly the same.
  • I asked her about using ASL with Alex – it’s definitely something we all want to learn at some point if not just because his hearing aids / implants won’t always be on, but we will certainly hold off on using it with him if it delays his speech or hearing skills in the early stages. She said that it was definitely up to the parents and that there was no research that indicated anything definite in terms of impeding oral / hearing skills, but she DID say that the school had some experience with kids who came in with ASL and that they would lean on it a bit, so to keep that in mind. The gist I got out of it was that there’s a balance to be considered, which makes sense. If Alex does well with the implants in terms of what they get him with hearing, we will likely not push ASL to maximize the potential he can get out of the oral school, then bring it into the equation later after he’s established. If he doesn’t do as well, we’ll definitely use more ASL.
  • She stated that, accounting for hearing aid and cochlear users, the school saw a ROUGH success rate of 80% with mainstreaming their students over the past six or seven years. She emphasized that that accounted for everyone in the school, including those with additional cognitive delays. I thought that was pretty impressive, and I would guess that with some of the better technology available that has noise reduction and other helpful features, it’s probably a better number as you lean toward recent years.
  • The oral school first gives kids one-on-one speech therapy, then it later becomes group therapy. The reason behind that is that group therapy more closely resembles the noisier environments that kids will encounter in more mainstreamed environments.
  • The school will actually “kick” your child out if it becomes clear that they don’t stand to benefit anymore. Nice to see that that’s actually “a thing” that they have to account for because the kids are too successful, and also nice to know that they’re constantly being evaluated.

Shannon and I were both very appreciative of the administrator actually being there, and it certainly ensured that our introduction to the oral school got off on the right foot. She left us her contact information and invited us to watch the classes at some point – we’ll certainly take her up on that.

The last part of the meeting was the actual fitting. This was a pretty straightforward and simple process. Alex sat on my lap, the audiologist injected some putty into both of his ears (maybe only a centimeter deep, Alex wasn’t too uncomfortable), and we waited for about five minutes for the putty to harden up. She pulled the putty out and showed us what the inside of Alex’s ears looked like. Those molds will be used to anchor the hearing aid speaker in Alex’s ears. We had read a story on the internet of a parent who felt like she was constantly getting new molds because her baby was growing so fast and so the hearing aids would squeal as the “seal” was broken, but our audiologist told us that we’d probably be good for a few months. The newer hearing aids don’t squeal as much as the older ones due to better technology, so they give a little more wiggle room in avoiding the rampant squealing that we had read about. Go technology.

So ended our meeting. We generally liked everything we heard, especially with regard to what was possible with the hearing aids alone, and it was very nice to get that warm introduction to the oral school that we’re hoping will be appropriate for Alex.

I think our next meeting is with genetics – more to come there.

The Early Intervention Evaluation / Plan Development Session

Last Friday was our first “big” meeting with the Early Intervention folks, so I wanted to outline how that went.

Three kind ladies came over; one was the EI coordinator that I had met with the week prior, one was a physical therapist, and one was a speech therapist. They introduced themselves, shook hands, took shoes off, yadda yadda. Very polite and kind, which I only bring up because this was a somewhat unnerving meeting for us. It’s easy to just write out what was happening and leave it to a series of events, but underneath everything there’s that feeling of “Wow, my kid is really in Early Intervention.” It was nice that the introduction to all of this was in OUR house and with non-clinical… humans. I felt that they were very considerate of the situation.

After the introductions, we basically got right to playtime with Alex. The ladies watched how he moved, cooed, reacted to us, etc. He was very well-behaved and even put on a bit of a show. After about twenty minutes of observation, the physical therapist made note that Alex was heavily favoring his right side, especially when laying on his back. She said that this wasn’t a MAJOR concern, but was still somewhat of a concern that we’d want to work on. She showed us a few exercises that we could perform and also emphasized that we’d want to give Alex a little more tummy time. None of that came as too much of a surprise. Shannon’s very perceptive and had noticed that Alex favors his side, and her equally perceptive mother had noted the same thing. As far as neck strength, we were admittedly much better with ensuring that Taylor had plenty of tummy time when she was a baby. I think a downstream effect of the gutpunch we received with Alex’s hearing loss was that some of those things fell more into the background. The physical therapist rated Alex as being somewhat behind where he should be at his age, but not by much.

The speech therapist noted numerous times that Alex was doing wonderfully with his cooing and eye contact. Hearing about his little speech was another both-good-and-bad moment. Great, he can coo, but he can’t hear himself and he’s going to stop eventually. The positive outweighed the negative, though, and we were thrilled when the speech therapist put his cognitive and speech skills ahead of Alex’s age. At least we have a little buffer! It was also nice to hear it validated that his eye contact was solid.

The next step of the meeting was to develop the plan. It was emphasized that we would be able to make any changes or tweaks as we go along and as we learn more about what’s going on with Alex, so we didn’t have to worry at all about oral vs. total communication or anything like that. That kept things pretty basic.

The output of that plan:

  • Alex will have a physical therapist that will check up on him once a month to see how he’s doing with his neck strength and to ensure that his right-side-favoring doesn’t become a real issue. Again, the PT wasn’t extremely concerned, but she did say it’s something that we should keep an eye on before his muscles get too used to the imbalance and it becomes more difficult to fix. Shannon and I actually like the idea that he’s going to get that individualized attention and have yet another set of eyes watching him for anything that might come up.
  • Alex will go through Buffalo Hearing and Speech for his audiological needs (hearing aids, etc). No surprise there.
  • Alex will have a speech therapist – I’m interested and excited to see what comes out of this at this young of an age.
  • Alex will have a teacher of the deaf. I asked what this person would be doing because I honestly didn’t know, and we were told that, for example, this person can make recommendations on what kind of toys we can get for Alex that are visual, how we can organize things for him, etc. I’m also really looking forward to working with this person and picking their brain.

We’ll have four appointments a month, and they’ll all be tentatively targeted to happen between 1:00 and 3:00 on Fridays at our house (which is huge!). That’s when Taylor naps and when Shannon’s mom is watching the kids, and it’s also one of the easier times for me to work from home or take PTO. I plan on being at as many of the appointments as I possibly can be. I really like the idea of Shannon’s mom being so involved because she’s a huge part of our kids’ lives. She’s already expressed how excited she is and she’ll take copious notes. Her readiness to do everything she can for Alex comes as no surprise.

That basically wraps it up. It was a whirlwind of activity that lasted for about an hour and twenty minutes, but I felt like Shannon and I soaked a lot of really good information up. We’ve DEFINITELY stepped up our game with the concerns that the PT brought up, and it feels good to be working on something with him / for him. I think we’ve already seen some progress; we’ll definitely keep it up.

My attitude toward Early Intervention is becoming increasingly grateful – I LIKE that Alex has all of these people who are going to be watching out for him and helping us know how to best steer him along the way. It’s like he has a team dedicated to helping him kick ass even above and beyond his hearing loss.

Next up – we have an appointment at Buffalo Hearing and Speech this week that I mentioned a few posts ago. We’re hoping Alex gets fitted for hearing aids and that we learn a bit more about the oral and total communication tracks that are offered. This Friday we’re supposed to have a follow-up meeting with the NICU Alex stayed at to follow up, but we’re hoping we can get out of it on the basis that we’re already in Early Intervention and getting evaluated, so there seems to be little point in wasting time by re-iterating that all is not honky dory. If we have to go to the meeting, however, we’re hoping to line up an appointment with the Genetics department there to get that moving along while we’re there. The hospital isn’t exactly next door to us and Shannon and I are trying to streamline these meetings wherever possible for the sake of our bosses’ sanity.

In other news, Alex continues to become an awesome kid. He’s very smiley and is starting to laugh a little more consistently, and he’s generally pretty easy going. He loves his family. I’m getting less sad about looking at him during these moments and getting my chin up higher as time goes on. It’s nice to see some of the initial pieces coming into place.

A Very Busy Week

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.