Month: December 2013

A Relatively Quiet Week

Posted by

1

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!

Advertisement

State of the Union – Two Months In

Posted by

3

I thought it might be a good idea to trace progress every month or so and sort of sum things up from a high level.

Two months ago we learned that Alex had SOME type of hearing loss.  Even though we were given indications that it might only be mild / moderate (which is safely within the realm of just needing small hearing aids), we were still heartbroken because it meant that Alex would have to use some type of assistive technology. It absolutely sent us into a depression that I think any loving parent would experience if they were told that their child would have special needs or have difficulty doing certain things that other children wouldn’t experience. It was incredibly tough to swallow, but we were encouraged with what hearing aids could do, how small they were, etc.

A month ago we learned the extent of that loss, which actually turned out to be severe / profound. Alex was deaf. I’m not sure if the level of depression this new info sent us into was as bad as hearing about the initial loss, but it was certainly awful. That’s when I started the blog, because I felt that some sort of outlet might be a little bit therapeutic and to also perhaps give back to the folks who had written things on the internet that made us feel better in some way, be it from their encouraging results or just to reinforce that we weren’t alone and that life would go on.

I logged into my blogging dashboard today to look at articles that I had begun but never finished, all of them from the first week or two that I started writing. One of them was a list of things that triggered depressive attacks and another one for triggers that made me feel angry. A lot of dark things were written there that make me wince now. I didn’t delete them yet because I think they’re still of interest because it was what I was genuinely feeling at the time, but I’m not sure what to do with them at the moment either.

Anyhow – I bring that up because it might provide a better picture of where I was a month ago vs. where I am today. I think Shannon parallels me here because we obviously talk about it a lot and generally share the same feelings about it, but I don’t want to speak too much for her.

So today, I think we’re generally doing much better. One of the many things that I was both angry and guilty about was that the grief I was feeling was keeping me from enjoying my kids. I can happily report that that really isn’t the case anymore. We still have our sad days, but we’re slowly… slowly… inching ourselves back up to something that feels almost normal. It’s tough to know what “normal” really is anymore, but I think that has more to do with the fact that we’re still acclimating to having two kids vs. having a child with a disability.

We can watch TV shows where the topic of hearing comes up without it making us so sad that we have to turn it off. We can watch Taylor play with toys and not instantly become sad when they play sound. We can listen to Christmas music without being absorbed by the fact that Alex can’t hear it. Shannon and I went to see a movie and it felt like a fun day date rather than a thinly-veiled attempt at feeling normal. I can listen to Taylor babble on and on and only smile and laugh at it instead of being consumed with the thought that Alex will never be able to do that.

I feel that we’ve made a lot of good progress in getting Alex the help he needs to start overcoming the limitations inherent with deafness, so the feeling of floating aimlessly in the ether has somewhat subsided. The Facebook group that we joined that’s based around parents of kids with cochlear implants has been a fantastic resource and a potential glimpse at what we MAY be dealing with. The experiences there are very real, and very encouraging. All of the specialists whom we’ve met with recently have generally been great people who we feel are ready to go to bat for our son. We’re close to to getting Alex hearing aids which we hope he’ll benefit from. We’re watching Alex’s physical development and seeing great gains in just the past week, where we’ve been emphasizing neck strength, tummy time, etc. There’s progress being made, and maybe even a sense that we’re building momentum.

I have high hopes for Alex’s future that are starting to become high confidences. All techno-hype aside, I’m genuinely feeling that the strong support system that he already has with his family is becoming stronger with the early intervention / therapy / audiologists that are being brought in. It brings genuine comfort to the situation. I’ve also tried to focus on all of the ways that our family is already blessed and that Alex’s condition is just a challenge that’s going to built both his character as well as our own, which takes some of the sting out of the feeling of victimization that we’ve felt for the past two months.

There are still mountains to climb. The genetic testing that’s coming up is scaring me for fear that Alex has more challenges coming that we don’t know about yet. Our hopes are clearly on the cochlear / oral route to the point where it’ll be a major disappointment if Alex isn’t eligible. From what we’ve seen / read / heard, though, not being eligible is pretty rare, and I feel at this point that I owe it to my family to be strong, and allowing myself to have that hope is the best way to enable that.

With a little bit of luck, we’ve seen the worst of it and will be trending upward. Our little boy is going to kick some ass, and we’re going to kick ass to make sure he gets the opportunity.

Alex’s First Hearing Aid Fitting

Posted by

0

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

Posted by

2

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.

On the Topic of ASL

Posted by

4

I was going to write about how yesterday’s Early Intervention meeting went, but that can wait for another day or two.

A commenter named Suzanna left a thoughtful message on my last big update and as I was thinking about I was going to respond to it, it seemed that the content of that response might be worth its own post because it’s a big piece of our early strategy and goals for Alex, so here goes.

Our overriding objective for Alex is to give him every opportunity in life possible. To us, that includes doing everything we can to help Alex overcome his disability. Yes, we look at his deafness as a disability. We live in a hearing world and there are obvious detriments to living in that world without the ability to hear. We worry about him not being able to hear danger closing in. We worry about him not being able to communicate with hearing people as easily as possible. We worry about him being at a statistical disadvantage when looking for employment (even though 20 years from now this might not be an issue). We want him to be able to appreciate music. To us, each of those things represents opportunities that, at the very least, become more difficult as a person who can’t hear. That isn’t to say that the deaf community should be pitied or that they need to be fixed. But at the end of the day, if modern technology / therapy gives us the ability to grant Alex any opportunity to hear, we’re going to take it for him, not because we want him to be “normal” and without regard to contributing to perceived ethnocide (yes, it gets that intense). With his level of hearing loss, this basically means very powerful hearing aids that would have limited functionality, cochlear implants, or auditory brainstem implants. I’ve written this before, but if I’m fixating on technology and implants, it’s because those basically represent what Shannon and I think are the best gateway to opening those opportunities up for Alex.

We’ve spent hours upon hours researching from many different angles. Our research has shown us how successful kids can be with these implants, the relatively low dangers associated with what’s an outpatient and NON-BRAIN surgical procedures, and we know what the many challenges and limitations are going to be. Most importantly, a very well-known aspect of developing a brain geared toward using hearing is that that hearing must be present and exercised within the first three years of a child’s life – the earlier, the better.  Knowing that, we are absolutely of the “TIME IS OF THE ESSENCE!” mentality.

So – this post is about ASL, but I wanted to give that above background to explain why we’re not going on about ASL quite as much. Primarily, it’s because ASL isn’t much of a variable for us. We plan on using it with Alex and learning ourselves.  To what extent is dependent on Alex’s needs and his therapy. Our objective for Alex at this point is to have him use speech primarily IF it’s possible (i.e., he takes to the implants well and therapy results are obvious). There are various schools of thought regarding the usage of ASL if attempting to teach speech as the primary mechanism of communication. One side believes that it hinders speech, the other doesn’t. I haven’t found anything decisive, but I do know this – in the sunniest of scenarios, if Alex gets his implants and does well with them, they still won’t be on all the time, and it’s unacceptable to us that he’ll simply be out of luck during those points. If nothing else, we (and the family) are going to make sure we know some of the basic signs. I’d like us all to know as much as possible without hindering Alex’s speech / hearing development, however.

So if I don’t talk about ASL that much, it’s for a few reasons.

  1. Barring Alex’s eligibility for cochlear implants, it’s simply not our first choice for Alex’s primary means of communication.
  2. We’re planning on learning ASL regardless, though only to the extent that it doesn’t interfere with his speech development. We’re still learning about how that works, but unbiased literature on this is relatively sparse
  3. I’m a technogeek and am still amazed at what these implants are accomplishing in the real world, and my true belief is that if Alex does well with the implants NOW, when it’s key, then his disability will present less and less barriers to opportunities as the technology improves. He only needs to get his foot into the door now and enjoy the advances (obviously assuming he wants to!).
  4. If it becomes evident that Alex isn’t doing as well with the implants or can’t get them in the first place, we will immediately switch to ASL. It is absolutely NOT off the table or something we’re trying to avoid.
  5. The chance that Alex won’t be able to take advantage of ASL is far lower than the chance that he won’t be able to go the oral route, so that’s more of a concern that’s on our minds.

A little story: one of the first things Shannon and I did when we learned of Alex’s hearing loss was to discuss how important it was to us that the family be able to communicate with one another and to jump on that early, so we added a few signs to our repertoire (Taylor learned some signs at daycare, so we already knew a few).  They included “dad,” “mom,” “sister,” “brother,” “please,” “more,” “food,” and “enough.” Though we’ve admittedly slipped on this in the past few weeks, we have been showing those signs to Alex where appropriate and working on them with Taylor (“Can you say ‘please’ with your hands, Taylor?”).

Honestly, as I write this, I’m excited to learn ASL. I love learning new stuff, and deafness will always be a part of my son’s life, even if the medical suddenly developed a shot to give him his biological hearing back next week. Though I don’t want him to be limited to only ASL when the vast majority of us don’t use it and don’t value it enough to get in the way of getting him his best chance of access to speech, I still want him to have that link, and I want us to have it, too.

Quick Thought

Posted by

3

Writing on this blog is going to force me to break my two-spaces-after-each-sentence habit. I apologize for the formatting in the meantime.

A Very Busy Week

Posted by

2

Well, the title says it all.

Yesterday:

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

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

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

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

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

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

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

A Sliver of News on the AN Diagnosis and other Thoughts

Posted by

0

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

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

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

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

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

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

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

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

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

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

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

Just keep swimming.

Putting my Money where My Mouth is

Posted by

0

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We just need the chance.

First Meeting with Early Intervention

Posted by

0

Just a few small updates.

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

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

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

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

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

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

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

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

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