One year

No updates from me in six months. I just never felt motivated enough to come back and write, I suppose.

I really, really wish that this was going to be an upbeat and happy post. I haven’t really even looked at this site since I wrote my last post in February, so it was actually a little jarring to see how upbeat my last one was.

I guess the short story is that Alex isn’t progressing in the expressive (talking) arena, and we’re worried again, so now I need my outlet.

Backing up a little bit, things were really looking pretty good in the winter back when I last wrote. Alex was doing well receptively, he was keeping his ears on, he was doing well in school, he was approximating some words, and he was even getting weened off of physical therapy. He was, for the most part, where he should’ve been at that point given his hearing age.

Today, he’s straight-up behind, and it’s heartbreaking. Alex still has low oral tone. He has a protruding tongue and a reverse swallow which will likely need work to reverse. Most importantly, though, he’s missed some significant milestones with his speech. There are a few indicators, but the one that’s bothered me the most is that by about four months in, he should have been able to approximate “m” “b” and “p”s. Alex cannot, or (probably wishful thinking) WILL NOT do them. Everything is a variation of “aaaah” or “uuuuh” “eeee.” So he’s got vowels, but missing some key consonants. The common theme for these is that they require lip work. Alex barely closes his mouth at rest, and I think I have yet to see him do it when he’s vocalizing. For a while there, it was relatively easy to write this off as him just taking his time, it would come, etc, but if you look at any sort of CI timeline, almost all of them will indicate that your child should have words after a year in. Alex doesn’t, unless you cheat and count “yes” or “daddy,” which is really more like “duhdee,” and both of which need to be coaxed out of him in order for him to say them.

Where things make my anxiety level skyrocket and my spirits plummet is when we start asking why Alex could be at this point. Back to Google, back to uncertainty, back to depression.

There are a few things that could be going on. A possibility is that his tone is just low and he needs more oral motor work. Alex gets OT therapy at his school, but we’re thinking that we need someone who specializes in this. We also know that Alex CAN close his lips, but no matter how many times we’ve sat in front of him and made a “Baaaaahbaaaaahbaaaaahb” sound with exaggerated lip movements, he won’t mimic. In some ways, I look at that as a good thing, because maybe he’s just being stubborn, but my hopes that that’s the case fade every day.

More scary, and what’s really going to be causing more sleepless nights, is that there could be an underlying neurological cause. Shannon researched Apraxia many months ago and has had it on her radar for a while now. Apraxia is a neurological disorder that falls on a spectrum, but generally what it means is that the brain has trouble communicating with the mouth and tongue. Because it’s a spectrum, there are a wide variety of symptoms, many of which Alex would seem to fall into, but at the same time Apraxia is generally not recommended to be diagnosed in children under three years old and when a child has hearing loss as well, it gets trickier to diagnose. All of that said, I’m still very afraid that Alex could have Apraxia, because reading the stories of parents who talk about what their kids were like as two year olds or reading some of the symptoms from the different sites, it’s not much of a stretch to place Alex into those scenarios.

The good-ish news is that Apraxia can be treated through more speech therapy, depending on how severe the case is. Were Alex to be diagnosed with Apraxia, it’s not a foregone conclusion that he won’t be verbal, but it’s practically guaranteed that he’ll have yet another fucking mountain to climb.

It’s also possible that it’ll just click one day and that’ll be that. I give this a 2% chance of happening unless he figures out that he can make cool sounds by closing his lips that he just happened to never try in the past year and runs with it from that point. I’m still chasing that down, though. At some point when he’s sitting on my lap, I really want to get him to just make a stead “aaaah” sound, close his lips for him, and cheer him on that he just made a “b” sound to see if there’s any reaction.

Physically Alex is also still behind. I didn’t read all the way through my last post, but I was probably talking about how we were excited that physical therapy would be dropping off. Well, he gets it once every other week right now, and we’re going to be bumping that up to every week very soon. Alex has technically improved, but his gait is still immature and he still trips pretty easily, often over nothing. Something that could easily be attributing to that is the fluid that’s filled Alex’s ears and throwing his balance off. Oh yeah, there’s that. Alex will be going in for surgery in a few weeks, again, to get new ear tubes put in, again, and possibly have his adenoids removed. We visited Alex’s ENT a few months back and he saw that Alex’s ears were filled with fluid and that the ear tubes that he had put in previously had fallen out (as they were designed to). He’ll be putting larger ear tubes in which should hopefully resolve the fluid issue. As far as the adenoids go, Shannon started raising her eyebrow at Alex’s constant open mouth posture months back, and in her research she found that a frequent cause of this was enlarged adenoids, and that was what prompted the ENT visit. The ENT had us take Alex to an X-Ray shop to get them checked out, but apparently they looked fine. He did tell us that he will take a look at them when he’s performing the tube surgery, and if they look large, he’ll take them out at that point. I’m hoping they DO look bigger at that point, because at least it’s something that would help explain the open-mouth posture and we would be taking a definitive action that could help. My hopes aren’t too high there, though.

I went off on a tangent there, but more on the physical side, Alex still W sits frequently. He’ll often (but not always) adjust his legs in front of him when prompted, but what he isn’t doing is putting his feet under his butt by himself. I think that’s where he ultimately has to go. Just writing this bit is depressing. I was talking about this stuff like a year ago and we’re still fighting that.

Believe it or not, that’s really the short version. Shannon did tons of research and found one of the best oral-motor therapists in the US and we even got on the phone with this person to talk. She’s convinced that Alex has a reverse swallow (when he swallows, he sticks his tongue out of his mouth like a baby instead of pushing it on his palette). She straight-up said “You won’t be able to fix that until he’s older because of the communication skills needed.” Great.

So that’s the general update. Emotionally I’m shit again. I was doing alright up until a few weeks ago when it became clear that Alex SHOULD have made more progress at this point and because it didn’t, that SOMETHING is probably wrong.

Something that REALLY gets to me is how guilty I feel about Taylor, our daughter. She’s just a happy, smart girl, and she doesn’t have any of these issues. There are times when Shannon or I are trying to do therapy with Alex and she’s running around talking her butt off, and I have to tell her to “be quiet” so that we can try to get something out of Alex. Taylor has never actually complained that we’re not paying attention to her because we’re too busy with Alex, but as soon as I began wondering about that I still felt guilty. The other layer of sadness in that scenario is the complete night-and-day difference between the two kids. Just ONE of Taylor’s words coming out of Alex’s mouth would probably make us throw a party. And he’s had so much time to do it. And we’ve worked so hard with him.

All of that therapy is exhausting, especially without results. I don’t even mind doing it, and I’m pretty sure Shannon doesn’t either. We’ve basically integrated it. Who I feel badly for is Alex. It’s terrifying to wonder if he can sense the disappointment coming off of me when he doesn’t mimic something I’m saying or to try to imagine how frustrated HE is that he can’t communicate as well as everyone else around him. Shannon and I are pretty good about giving him huge rounds of applause when he nails something and I think we’re both good at encouraging language where possible rather than showing our disappointment as some sort of motivator, but hey. We all have our down days, and I’m sure he’s picked up on it before.

To that point, Shannon and I have agreed that we’re going to give him some basic sign. Not full-on ASL or anything at this point, but he needs to be able to communicate effectively and it’s been shown in studies that sign language doesn’t harm verbal language development, and in fact it often assists it later down the road. There’s a popular show called “Signing Time” that we’ll add into the rotation. The CI boards I’ve gone on about have had some good advice on this front as well – let them make the sign, but ask for them to approximate it too, etc. I can actually see where that could help things at this point. If it gets to the point where Alex uses Total Communication (sign and verbal), so be it. If nothing else, we know at this point that he has access to the world of sound and he’s doing well with that.

There’s a lot of fear here obviously, but at the same time there’s still hope  that things could still click, or that we could find the right therapist who knows the right exercises and techniques to get more out of Alex, etc. There are lots of kids who don’t have hearing impairments or things like Apraxia and aren’t talking at one year old (hearing age). But we’re in that window now. We’re officially allowed to begin worrying, and it’s brutal to be here again. We’ll get Alex whatever he needs and won’t idle, but just feeling this way is completely sad in itself. I’m looking out my window now and it looks like it’s going to be a beautiful summer evening, but I know I won’t be able to completely enjoy it with all of this on my mind. Hopefully this is just another of those low points and we find That Thing That Works for Alex and get back to some more happy updates.

Not proofreading.


Six Months

Well, we’re six months in, and progress has been pretty wild.

First of all, he’s a full-on walker. He ca basically do everything now, including getting himself up in the middle of the floor. He basically never crawls anymore unless he’s down on the floor and he wants to get something that’s three feet away. This has been pretty awesome and a huge relief since it’s the end of a lot of fears that we had regarding additional physical disabilities. I’m not sure when his physical therapist fades out of the picture for sure, but it’s gotta be pretty soon. Not as if we WANT to lose her – at this point, she only comes to the house once a month and we only have amazing things to say about her as an instrumental person in talking us off the ledge when we were afraid he had physical issues. But still, just to get over that milestone would be nice. One less therapy to worry about. I think next time we have a meeting the topic will come up, but I’m guessing we’ll have another meeting after this upcoming one to see if Alex can walk backward and that sort of thing. No big deal.

The school situation is great, except for the bussing. We’re currently having a pretty wretched winter over here in Buffalo, and that’s lead to more than a few delays with the bus that we haven’t been thrilled about. Last week the bus simply didn’t show up to pick Alex up, so I called the bussing company twenty minutes after they were supposed to get him and was told that the driver had just forgotten to come in. Pretty shitty thing to not even call us, but there it is. Luckily I was able to just drive him in myself and he was only about ten minutes late, so despite being massively inconvenient, it wasn’t like Alex missed a day of school or anything. I keep telling myself that once the weather gets a little nicer the bussing situation should also improve. Starting in January of THIS particular winter was just bad luck. Anyhow, Shannon is driving Alex in one day a week and I hope to do it once every other week or so. It gives us good time with his teachers to see how Alex is doing, get some face time in, that sort of thing.

But as I said, school has been great. His teachers are awesome and continue to prove that they’re truly invested in him. Everything we’ve heard is that Alex is doing well, is receptive to what’s being taught, and is doing well with his ears in general. He truly has a kickass team over there, which I don’t think I’ll ever take for granted. It’s so easy to picture Alex in a school situation where we don’t think his teachers are A+ players and having to doubt if he’s getting all of the benefit he can, but that, thank god, is not the case here. It’s great to come home on a day that Alex went to school and know that he got three hours of quality, targeted, listening / speaking therapy. Very very grateful.

As far as how he’s doing with his CIs – he isn’t talking or using any words yet, but we’re definitely getting rough approximations of words here and there. His receptive language (i.e., words to which he understands their meaning) actually reminds me quite a bit of Taylor’s a few months after she started understanding her first words. He’s just soaking them up at this point. His vocabulary has to be over 100 words or so at this point, and he surprises me at times with the things that he understands. If we ask him to point at his point / ears / nose, he gets them right basically every time. He knows his names really well, too.

Alex mostly uses his snugfits now (the things that just use Alex’s ears to hold his CIs on, not the headband). They just look better, and he actually has an easier time keeping them on than the headband since they appear less likely to irritate him. Unlike the headband, the snugfits can’t ride up or down on him, for example. We still use the headbands twice a week just to give his ears a break. Though the CIs don’t really send his ears shooting outward, they still put a little pressure on them, so we’re figuring that giving him two days a week off with them could be beneficial in the long run. This is an area where it’ll be nice when the CIs shrink down further. Four more years to go there.

Alex really has no issues with keeping his CIs on. He isn’t putting them on himself yet, but they generally stay on by themselves and he seems to have a pretty good feel for how to keep them on his head. He doesn’t roll around on the floor too much, but I could swear that when he does do it, he’s still a lot better at maneuvering his head in such a way that it doesn’t knock his ears off. Regardless, I definitely don’t feel like I spend a lot of time chasing down his ears and putting them back on. At all. Part of that could be that I’m used to putting them on and adjusting them and have gotten good enough at it that it only takes five seconds do it, but I really want to say that I only tweak them six or seven times a day. I remember before Alex was implanted thinking that chasing him and his ears would be an all-day / every-day thing, but nope.

Alex had an audiology appointment last week, and he was measured in the 15 dB range across the board for both ears. Basically, that’s the equivalent of a whisper. Less than a whisper, actually. Because he’s hearing at that level across his CI spectrum, it means that he has access to all of the different sounds of speech and then some. Obviously it’s no guarantee, but that sort of result, at his age, is excellent and means he has a really good shot at speech without any sort of affects. Time will tell, but he’s got what he needs so far. His audiologist did make a tweak to the maps on his CIs that have made him a little sensitive to his CIs when we first put them on him in the morning. He winces for a minute or two, then it passes. No big deal.

The last thing we did at the audiology appointment was get Alex’s FM system set up. Rewinding a bit, cochlear implants and hearing aids have a common downfall in that their microphones have a poor sound range compared to that of the human ear. CIs are also at a disadvantage because they have less effective frequencies to send to the brain, which can automatically filter sounds that aren’t important from what are. This is where FM systems come in. They basically boil down to microphones that send their signal wirelessly to a user’s hearing aids or CIs. They’re a key tool in classrooms for kids with hearing disabilities. Teacher wears the mic, kid gets the signal. From all of the reading we’ve done, families don’t typically get their own FM system for whatever reason. My guess is because it’s not REALLY required for day-to-day home life they’re not really high on the priority list. Shannon and I wanted to get one, though, because it would come in handy in any loud situations (walking around in crowded areas, fairs, that sort of thing) or where distance would be a thing – Alex running around in a park, for example. They also come in handy as a backup in case the school’s isn’t working properly. We pushed for it months ago and received it at the audiology meeting. We were shown how to operate it and how the receivers fit onto the CIs. I was pleasantly surprised by how small they were, so that was a plus. The transmitter is a little large, mostly because I think it actually has some legitimate range to it (I want to say out to 200 or so feet), but it’s not huge. We haven’t used it yet, but it’s nice to know that we’ve got it.

I think that’s about it for now. Everything’s going pretty smoothly!

21 Weeks In

Another big lapse, even though a lot has happened. I had to go back and read my last entry just to see where I left off.

The big one is that Alex has started school, and so far, so good. The first two weeks we dropped him off and picked him up, primarily because the bus service was messed up in one way or another for the first two weeks. Shannon stayed with him the first day, and I stayed with him the second.

From what I saw, I think school is going to be extremely beneficial to Alex. Every activity they do is catered toward encouraging speech and listening skills, and they’re even teaching some more basic skills like how to eat with a spoon. There’s only six kids in his room and usually two teachers in there with him, so he still gets plenty of attention. They have a pretty huge gym area that’s full of mats, stairs, little tricycles, etc. They spend a little time down there every day. They also have music therapy classes that he’s clearly into. Kid loves to “dance,” which still means moving his head from side to side with a big grin on his face.

I’ll dive into detail at some point, but I’m pretty happy with school overall. The one issue at this point is that he’s at the age where his stranger anxiety is pretty hardcore, and so when I dropped him off it would generally suck because he’d be crying and reaching for me. It’s typical kid stuff, but I can’t help but feel guilty that he thinks I’m abandoning or offloading him somehow, which in turn stirs up anger that he has to even do any of this in the first place. The teachers are awesome, though, and they’ll text me and say he’s doing fine and participating. It’ll get better, but it sucks.

While on that topic of stranger anxiety, this was the first morning we had Alex take the bus to school. I was nervous about it for the past few days, and unfortunately, my nerves were at least somewhat right. Alex started crying the second I handed him over to the aide on the bus. It got to the point where he was leaning against the window where we were watching him, and he was just not in a good place. Sucked to see and probably not an image I’m going to forget soon enough.

Alex’s TOD let us know that he had arrived but had a rough transition after getting off of the bus and that Alex’s speech therapist was sitting with him to calm him down. Not long after THAT, she sent us a picture of Alex down in the gym area where he looked fine, CIs on, ready to go. I asked how he was doing and she said that he calmed down quickly and is now his happy self again, followed by another picture of him looking through a tunnel. That took a lot of stress out of it, but the bus situation is still going to have to improve. It apparently didn’t arrive until 9:20, which is 20 minutes after his “class” began, not to mention that it means he was on a bus for an hour and twenty minutes. If that’s really the norm, then coupled with the crying, we’re going to figure out how to get Alex dropped off to school ourselves. I have reasonable flexibility and Shannon can use FMLA if need be. I’m not as worried about the trip home, because each day  we took Alex him over the past two weeks he just slept in the car. So that’s not as big of a deal. The trip in is going to have to improve, though, if not just because of that twenty minutes he loses. We didn’t go to bat for him and push for early implantation and eligibility to get into school just to have a bus remove 10% of the time he’d get in there. So we’ll see what happens there.

Anyhow, school in general is going well, but have to iron out the transportation.

Alex’s listening skills continue to improve. Shannon and I still do structured therapies with him just about every day. Shannon has been “reading” a book to him that’s basically just big pictures with a lot of stuff in them, and Alex is getting increasingly better at being able to point to the things that Shannon asks him to find. I’m not sure how many words he has in his receptive vocab, but at this point I think 50 is being pretty conservative. Expressively, he isn’t doing anything much differently. There’s still a semblance of babble and we’re occasionally getting “muhmuhmuh”s, but they aren’t consistent yet. One of the things Alex’s speech therapist saw in school was that he has his mouth open quite a bit, so she recommended that we encourage more mouth strength by giving him more straw-based cups and less binkies, so we made that change pretty quickly. Everything that we’ve read and been told on the subject of expressive language is that one day, from out of nowhere, it’ll basically just explode. I’m eager for that, but at the same time, I know that because he’s doing so well receptively, he’s getting the input. If it’s getting in, it’ll come out.

He DID have a little spell last week where he’d fight it when we put his ears on. I saw it happen two or three times, which was uncharacteristic of him. I think it had more to do with the physical apparatus on his head than the CIs actually working, but it was sort of scary when it happened because my fear was that he was going to just start fighting every time. That’s a horror story that I’ve read more than a few times with other CI parents. That’s just about completely cleared out, though.

He continues to come along physically. At this point, he’s considered a walker. The one thing Alex won’t do at this point is get up in the middle of a room with nothing to pull himself on, but if he DOES have that, he’ll generally walk to his destination. His physical therapist is happy with his progress to the point where she said we could drop down from two sessions a month to just one, which we went for. Like me, Alex has pronated feet (standing up, his feet point outward instead of straight ahead). His PT recommended getting a customized shoe insert that would help to fix that. I’m thinking about getting them too if we’re going for it, why not? That’s it on the physical front.

Not too much else going on. Primarily, we’re just normalizing to yet another change with the schooling and busing. It’s a lot to handle, but Alex has already benefited so much that I’m more in a place where I say “this sucks, but we’ll get through it” instead of “I’m not sure if this is right.” When Alex doesn’t have his ears on, I’m so used to him being able to hear that I’ll still catch myself calling to him. I definitely like that the ability to hear is something I’m just automatically associating with the little guy.

Last thing worth mentioning is that there’ve been a few promising articles in the news over the past few weeks. A drug company is starting human trials with a genetic therapy, delivered by an engineered virus, that would trigger hair regrowth in the cochlea. The trials will end in two years. There was another article that just talked about how more biotech companies based around curing hearing loss are popping up. I’ve felt confident that this was going to happen, but it’s still amazing to read that actual candidates for a straight-up CURE are being delivered to actual people. Keep it coming, please.

14 Weeks In

Alright, so maybe every three weeks per blog wasn’t going to happen. Alex’s progress remains steady, but gradual, so we don’t have way too many killer “AH HA! GOTTA BLOG ABOUT THAT!” moments.

On the physical therapy front, Alex is on the cusp of walking by himself. Shannon and I will sit in a room, put about 12 feet between the two of us, and Alex can walk that distance. His biggest issue at this point is just doing it himself. If he was a little more bold, he probably would’ve been walking back in November or so. I’m impatient, but it’s not really stressing me out. There’s no doubt we’re seeing progress, this is nothing out of the norm. He’s just a cautious kid.

On school – Alex is in, which is huge. He’ll be going in three months prior to when most kids start. We ran into a little bit of resistance with the Early Intervention program, initially – they generally stick to their guidelines, which stated that Alex had to be 18 months old prior to entering. Luckily, we had to have an annual meeting anyhow, so we had a great meeting time to discuss why we wanted Alex to go in. Leading up to this meeting, I had read up on what sort of options we’d have to fight a decision against Alex going to school. The next course of action would have been to go to arbitration, which would’ve been costly for the Early Intervention program since they have to pay for the arbitrator, have someone argue their case, and make it all happen within a month of our saying we want arbitration. I’m glad that it didn’t come down to having to go that route (which we would have). At the meeting, our speech therapist basically just laid out a rock-solid case as to why early schooling would be appropriate for Alex in a very fluid way that I wouldn’t have been able to express. The big points:

  • Alex is doing very well with his therapy now and would benefit from the program; he isn’t the bottleneck.
  • Alex is going to daycare anyhow, so why not give him the therapy?
  • The classroom environment is appropriate for Alex – he won’t be mixed in with kids who are 3 and 4 years of age who could trample him or anything like that.
  • Early implantation / therapy is becoming increasingly common because of the benefits, there’s lots of research that has been done in this area.

After she was finished, there was a lot of head nodding, and that was that. We were good to go. The supervisor who attended who had to approve it explained to us that she wasn’t TRYING to deny Alex the schooling, but there’s a process, the reasons have to be there, etc. It was all completely fair. I was geared up for a fight, which I guess isn’t a bad thing because I would’ve been prepared, but really we just had to validate why this was going to be good for Alex.

So there we are – pretty big move. I can’t think of what the next possible fight would be for a few years… probably when early intervention ends, but that doesn’t happen until he turns three and I’ve never heard of that transition being particularly rough.

Alex will be going for three hours a day, three days a week, starting in January. Parents are encouraged to see what goes on at the school so that they’re aware of what their child is up to and to hopefully also bring some of what they’re doing at school home. We’ll certainly be doing that because making sure that Alex’s therapy continues at home is hugely important to us. Very cool to think that he’s doing as well as he is right now, and he’s going to literally be getting nine times as much therapy per week soon. I’m not too anxious about it outside of falling into the groove. The bus that will pick him up and drop him off is probably the only thing that has me a little be nervous, but they have attendants on the bus who can help keep his CIs on on the bus and it’s apparently a pretty straight shot between our house and Alex’s school – it’s not as if they’re picking up twenty other kids or something. As far as the school itself goes, though, I’m not worried. Alex has already done the daycare thing, though he might have some initial anxiety about the new environment. Even then, though, his teachers and therapists will be around, so he’ll have some familiar faces around.

Speaking of Alex’s school, Shannon and I sat on a panel for a little dinner event they held. We were asked to participate and answer questions about our experience so far and we gladly accepted, since our mantra with this whole thing is to try to help out others if we can and make the process a little less mysterious and scary than it was for us. Anyhow, there weren’t really too many questions directed at us from the audience (those with younger kids, we already had been in touch with at some point or another and those with older kids, they were further than we were anyhow). I can’t think of anything way too interesting that came out of it. Our general message was to integrate the therapies into your day-to-day lives, keep the CIs on, and do your research. It felt somewhat odd to say that, because you would THINK that would be pretty obvious, but I guess a lot of people don’t do that research so maybe they haven’t seen all of the success stories that all used those strategies. At any rate, I was really happy to help out. I hope Alex is one of the kids that sits on the kids panel at some point. The only other thing I can think of that was noteworthy was that the other parents who sat on the panel had a child who had recently graduated from the school and mainstreamed. They had nothing but good things to say and that the mainstreaming process has actually been solid so far. Good to add yet another positive story like that.

As far as Alex goes, his receptive language (what he understands) is coming along pretty nicely. We’re guessing he’s somewhere in the realm of 25-30 words that he knows at this point. Expressively, he isn’t babbling yet, but we are getting some “EIEIO”-like sounds from him. Everyone’s theory at this point is that he’s again on the cusp of THAT blowing up, so pretty exciting.

Any fear I might have had about taking Alex out in public and getting stared at is basically gone. I don’t care anymore and now that I’m not looking for the stares, I don’t really notice them. I know he’s probably getting some double-takes, but that’s a complete joke compared to the benefit he’s very obviously getting at this point. I’m guessing that we’re going to see the next crop of cochlear implant processors coming out soon – very excited to see what they do with those, at least in terms of size reduction, waterproofing, etc.

He has little issue with keeping his ears on, even with the snugfits. Pretty sure we got lucky there, especially after talking with another parent who said her child wouldn’t keep them on for more than an hour and a half TOTAL per day. I’m very grateful Alex has been so good about them, because just keeping them on was a major source of stress for lots of other parents and I don’t feel like I can really relate.

I brought it up last time, but it’s worth repeating – just an incredible difference in one year.

9 Weeks in

This is probably the easiest way to come up with titles, especially while nothing too crazy is happening.

Alex continues to progress in that he’s picking up some new words. I’d say he knows (as in understands the meaning behind but can’t actually say) about ten or so now. He’s still vocalizing a lot, but nothing babble-y. Our teacher of the deaf told us that it’s not uncommon at all for hard of hearing kids to completely skip the babble phase and dive right into actual words, which I’d never read anywhere. Hoping that’s the case.

He still isn’t walking yet which means we still have a physical therapist, but we don’t suspect any sort of balance / vestibular issues. He’s just a little bit cautious. The good news is that he loves being walked around (where he holds our fingers), but he’s a stubborn little guy; he’ll stop in his tracks and throw a little fit if we try taking a hand away. This is an area I want to work with him more in since it will get him away from needing a physical therapist as well as qualifying him to go to his oral school early.

Speaking of that – last week, our speech therapist mentioned that we could likely get Alex into school early if we wanted. I’m pretty sure I already wrote about this, but basically “school” means that Alex would get picked up by a bus, driven to Buffalo Hearing and Speech which is about a half hour away from our house, and he’d spend three hours a day there for three days a week. Each one of those days would be comprised of activities and therapies focused on building up his listening and speaking skills. We had originally thought we wouldn’t be eligible until Alex turned 18 months old in March, but there’s some flexibility and both our teacher of the deaf as well as our speech therapist think Alex is ready because of how well he’s doing already. He’s supposed to be able to walk by then, but we’re thinking that by January he should be there, or close enough.

Shannon and I are both pretty excited about getting him into school early; he’d get nine hours of focused and directed attention and we’re all about pushing him and taking advantage of all of the benefits that are available to him as an early implantee. Additionally, the earlier we get him into the three day program, the earlier we can likely get him into the five day a week program to get him even more exposure. So that’s the new push. We’ve already hammered out some of the logistics which look they could be pretty helpful for our family in that we’d have our super-dependable and super-involved nanny (my sister-in-law) at the house for four days a week to keep things straight while we’re not around and keep both Alex and Taylor alive and happy, so I’m feeling about ready. The biggest question mark at this point is probably how the bus will work (I don’t want him on a bus for two hours or something insane), but from what we’ve heard so far, it shouldn’t be an issue and there’s some opportunity to butter up the bus drivers and the attendants who ride with them, which we’ll obviously do.

I spoke with a mom about a week ago who just recently learned that her child had a profound hearing loss and gave her some of our experiences and hopefully a few words of encouragement. It felt nice to do, because ever since the blur of depression and confusion we started going through about a year ago began, I wanted to be the person I wish that WE had had at that point to give us the details on the doctors, the specific processes so that we really had a good idea of what was going to happen, the overview of what you’ll find on the internet and where the good stuff is, and most importantly, to hear that reinforced “but seriously, everything’s going to be fine.” I had a little trouble with the last part because, having been in those shoes, I completely get how that wouldn’t bring too much comfort because it depends on certain things lining up like the ability to get CIs in the first place and feeling that you have no luck by default because your kid was that one in a thousand who was affected, but regardless, I hope some of that came through just by tone of voice.

I mentioned it to Shannon, but given that our names have been given out to a few “new” parents already, I wouldn’t mind formalizing something with BHSC where they give our info out to anyone who’s interested and we have them over for lunch and just let them bombard us with questions, show them how Alex is doing and what the CIs look like and feel like in real life… whatever would help. If we could take a few scared-shitless parents into our house and have them leave with a little less confusion, a little more confidence, and having seen a few things that might give them some encouragement, it’s absolutely worth whatever the time commitment would end up being on our side. I would’ve killed for that, but the people that we reached out to who lived in our community never even responded.

Pretty sure I’m going to pitch that to the school at some point soon.

I’ve already briefly mentioned it, but I’m flying pretty high on how much better things have improved in a year. This time in 2013 we were absolutely in the shitter. I can’t even look at the first few posts I wrote because I’m sure I’d cringe at them in embarrassment for what would read like intense melodrama, but that was the reality of how I felt. A year later and we basically accomplished everything I had hoped we’d be able to. Alex is on that track and he’s kicking ass so far. No surgeries or anesthesias left to freak out about, and we’ve settled into a very livable and doable pattern. This is also holiday season, which Shannon and I both love. Nearly all of the fun was sucked out of last year’s because there was that constant underlying fear, but we’re through that now. Really, really looking forward to what feels like our first holiday with the full family without the horrible baggage.

Last thing I guess worth mentioning is the therapies – we’re up to once a week for both the teacher of the deaf as well as speech therapy. They’re both following the same general pattern. Listen and learn box, Mr. Potatohead (for body parts), and generally showing us the ins and outs of how to reinforce listening skills with Alex. We generally learn something new each time despite the processes being repeated weekly, but us learning those new things and incorporating them into our day-to-day interactions with Alex are much more valuable to his continued development than the half hour therapies they do by themselves. They constantly tell us that we’re all-star parents, which is great for reinforcing our efforts though surprising because we’re not doing anything you would think would fall out of the envelope of normalcy.

Last random note – Alex is using Snugfits a little more and doing well with them. They’re not quite as easy as the headbands, but they also aren’t as bulky, which Shannon and I both like. As he continues with his CIs, I think he’s starting to take to them more and more. He rips them off of his head even less than he did a month ago, which was infrequent as is. He keeps giving us signs that he misses them when they’re not on, too. Still feeling very fortunate in that regard. Not only is it easier for us in terms of maintenance (though flipping his magnets back onto his head when they fall off happens in total autopilot now), but it’s nice for him to give those indications that he’s digging these and that he’s liking being a hearing kid. I’ve never really doubted that we weren’t doing what’s best for him given the direction of deafness and treatments in general, but those signs from him are still good for the soul.

That wraps it up for now – back in another three weeks, maybe?

Six weeks in

I was telling Shannon the other day about how weird it feels to NOT be writing that much about what’s going on with Alex now that he has his implants, because you’d think that this is really when most of the cool updates would be. When we first started walking down this path less than a year ago, I read more than a few blogs about the topic and noticed the same sort of thing; lots of updates leading up to surgery, a few after, and then the updates just sort of trailed off or became much less frequent. I had guessed that most of that was because progress would just be a gradual slope without way too many specific things to write about that would prompt those “I’ve gotta write about this!” moments, and that the other influencer might just be that things normalized for those people.

Well, I’m not sure if I can speak for those other bloggers, but I can say that the above is the case for me. Alex has been doing great with his implants. They weren’t that difficult to manage when he first got them, especially after we started using the headband, but now it seems like it’s gotten even a little easier. We’re experts in getting his magnets and headband back on when it falls off or he tears them off (which, thankfully, is still relatively rare), so the equipment remains not a big deal. I’m still sensitive to the people staring thing, but I also know that I’m not looking for people looking as much. So that’s gotten easier.

Most importantly, though, is that we’re getting real results already. Alex has been activated for less than two months, but he’s already CONSISTENTLY responding to his name, and he’s made it clear that he gets that certain sounds are associated with certain things in real life. We can now say “up up up” to Alex without any other visual cues, and he’ll often raise up the toy in his hands, just like we do in therapy. That’s pretty substantial. Additionally, he’s starting to play with his voice a little more. It’s tough to say at this point that when he says his “aaaaah” after we say “Ball, Alex!” that he’s trying to specifically say that, but those moments are happening more and more frequently. Alex’s teacher of the deaf saw him do that during his last therapy and thought it wasn’t coincidence. I’ll trust the professional opinion there.

He’s doing well. He’s doing really well, actually. I wouldn’t have dared hope that Alex would understand his name and turn to it in anything less than four months, never mind six weeks. He’s definitely vocalizing more (I just heard him do it in the other room), but at this point they’re mostly still “ooooh”s and “aaaaaah”s. But there’s new stuff sneaking its way in there. I have a feeling we aren’t way too far away from babble.

Shannon already wrote a great blog on our last visit to the audiologist, but Alex is already qualifying as only having a mild hearing loss with his CIs. That’s only going to improve, and the fact that he’s hearing at that 30db level implies that he’s already hearing all of the major speech sounds, which in turn implies (but isn’t guaranteed!) that his chances of having a speech affect will be reduced.

Anyhow, bringing it back to the whole blog-trailing-off thing, I get it, because now a lot of the fear is dissipating. Getting results like these so early on is encouraging to the point of being emboldening enough to start thinking that, huh, maybe everything is gonna be just fine, because he’s on the path, his trajectory is great, and our lives aren’t ruined or revolving solely around his hearing loss. Dare I say things ALMOST feel normal, and do-able.

A line that you read a lot in some of the more spirited cochlear implant discussions is that cochlear implant devices aren’t miracle devices, and they’re not a cure. Well, bullshit – at least to the first part. What we’re already seeing feels miraculous, even if I understand the basic underpinnings of the technology and biology that allow it all to happen. That’s all the clinical side of things. On the human side, I can call my deaf son’s name and he’ll turn and look at me and smile after only a few weeks’ worth of practice. He’s been doing this for a few weeks now, but I still call him just to make sure it’s for real and to feel that overwhelming sense of “Yup. He’s doing it.”

As for the second part about CIs not being a cure, that line of thinking is right, but more so on the clinical side than the human side again. CIs have cured Alex’s inability to respond to his name or hear our voices. (Speaking of voices, it’s becoming increasingly clear that he can distinguish between my voice and Shannon’s voice.) He’s been cured of his inability to not enjoy music, because judging by the way he bobs around when there’s music playing, he’s having fun. He might not be able to hear all of the nuances of the different instruments or of the harmonies, but maybe that doesn’t matter. I can’t see in infrared, but I don’t feel like my eyesight is worthless when I’m looking at the trees changing color with the autumn. And as always, I’m certain that these things are going to be unlocked for Alex over the coming years so that when the real cure DOES come and there are no more compromises to be made, he’ll have a solid foundation to build on. Every day we move forward the strength of that foundation becomes increasingly evident through his reactions to sound, the feedback we get through our therapists, and the reactions we see on his audiograms. He’s not cured, but the detriments to his hearing loss are being chipped away at.

That’s generally how I’m feeling right now, though I’ll emphasize that I know that these early indications aren’t going to guarantee results as we keep going down this path and that we still have many years of hard work and challenges we haven’t yet faced coming up.

I’ll give a more concrete update about what’s going on with therapies later.

A few weeks in

I’ve been posting a lot less frequently, I think, because I think we’re really starting to run low on big events. We’re definitely on that road that we were pining for so badly a few months ago.

Alex had his second mapping session last week. It went well, and went much like the first. The audi chose a few different electrodes to map for each of his ears and increased the stimulation until Alex would react (cry), then immediately turn the stimulation off and mark where that reaction took place. She felt that Alex’s right ear was already pretty close, so more time was spent on his left ear. We were given four more programs to move Alex through. Our next appointment isn’t for another few weeks, but this next one should be exciting, because they’re going to put Alex into a soundbooth and test his reactions. That should give us an audiogram which will give us a semi-decent idea about what sort of sounds he can hear and how loud he can hear them at, but it’s still a little bit of guesstimating since Alex isn’t at the point yet where he can say that he picked something up. So that’ll be interesting.

MORE interesting, though, is how Alex is doing with his CIs in practice.

In short, he now reacts to sound. It was subtle at first. I’d make a loud noise and he might turn slightly, but I’d say there was a good chance that I was making it up in my head. I’ve been very skeptical given that we thought he could hear prior to his formal diagnosis. But no, not anymore, this is for real. After his last mapping session, something seemed to click. I’d say that about three out of four times, if his name is called and the environment is relatively quiet, he’ll stop what he’s doing and look for the sound. I doubt that he gets that when we say “Alex” that we’re directly referring to him, but frankly, who gives a shit at this point. His brain is at least starting to get the concept of sound and Alex is clearly making the connection that when his new sense goes off that something in his environment is probably happening, so that’s… well, it’s amazing. I was braced to not see any results for a few more months.

I told Shannon that in a way, I feel like Alex is almost “whole” again (running under the assumption he had hearing prior to receiving ototoxic drugs). Yes, he’s behind, yes, the quality of what he’s getting isn’t nearly as good as what those of us who have normal hearing experience, but… this kid now frequently responds to us making sounds.The simple act of seeing him look around for what made that sound relieves so much of that fear and anxiety that wrecked me over the past year.

He isn’t babbling yet, but that’s not really expected for another few months. I’m fine with that.  He’ll only be fourteen or fifteen months by that point, and it’s not like his peers are going to be reciting Shakespeare to each other.

Shannon ran to Target last week and picked up all of the toys that our therapists use for Alex’s speech session. I’ll probably describe it in detail, but the idea is you have two planes, two cars, two horses, two baby toys, etc. You associate a few words with each of the toys and repeat them to the kid over and over. The words should use LING sounds (which cover the spectrum of speech sounds). At first, the kid just soaks up the sound and makes the association that what he’s hearing, words, have meaning and relate to these toys that are in front of him. Eventually, the exercise will get to the point where if we just say “up up up” while Alex has a plane in his hand, he’ll move the plane up in the sky without seeing us actually do it to demonstrate that he’s only using sound to get his cues. Our therapists didn’t tell us that we needed to do it, but what they do there is so repeatable that it seems silly to NOT do it. We’re essentially giving him three times as much directed therapy as he would’ve received otherwise, and on top of that, he seems to enjoy it.

Speaking of therapies, I just signed the paperwork to get Alex bumped up to getting both speech therapy and teacher of the deaf therapy once a week instead of once every other week. Now that Alex has his CIs and is demonstrating that he’s getting something out of them, we’re all about maximizing the benefit that he can get. Our physical therapist was over last night and re-affirmed that Alex is doing fine physically. She’s guessing that he’ll be walking by late October or early November, and at that point I think she basically ducks out. We still don’t have any concerns about him physically. Haven’t noticed any balancing issues. Alex still likes to bob his head occasionally, but it’s become very obvious that he’s doing it just for fun. He’s also waving now, which is also awesome. Seeing all of the communication paths getting built is very cool.

What else.

Our audiologist has coordinated with our ENT to request an FM system and I know that our service coordinator has the paperwork for that, so hopefully we’ll get that soon and have another tool at our disposal if we’re in loud situations.

People staring at Alex for a little too long still bothers me, but not as much as it was before. Much of that, I’m sure, is due to the fact that I’m not looking for people who are staring, so that helps. It’s also nice that there are still folks who still stroll up and say “he’s adorable!” and the like. Regardless, my sensitivity to it is starting to go down, especially now that we’re starting to see some of the very real benefits. As always, I’m completely of the mind that the bulky and easily visible setup he’s using today is merely temporary, so that’s a positive thing to hold onto.

The headbands are still working wonderfully. He still tears them off his head occasionally, particularly if he’s bored, but the whole thing is still much easier than dealing with his hearing aids and, in general, just not really a big deal. No issues with the devices or any of the equipment. I can change the batteries out in like twenty seconds now. We definitely have a manageable groove now.

Daycare is still working out well so far. Every time I’ve picked him up he’s had his CIs on, and every time I ask how he did with them today I’m told that they were fine, had to be replaced a few times, but no major issues. I like that he’s “mainstreamed” already, even though it’s not actual school.

I can’t think of much else to jot down here besides that I think Shannon and I are definitely feeling pretty hopeful and happy with how things are heading. I don’t think I’ve had a “wah, he’s deaf” moment that was strong enough to put me in a garbage mood for a few weeks now, and I’m ecstatic with how he’s already reacting. His therapy team remains awesome and I feel like Shannon and I are doing a good job with him to make sure he’s getting all of the support needed to maximize his benefit with the extra therapies, so the buildup of momentum I’ve mentioned before is still in full effect.

Eventually I’ll start recording some of his hearing moments and putting them up here to show more concrete examples of the sort of stuff I’m talking about, but that’s it for now!

First Mapping Session

Writing this over a week and a half after the fact, but better late than never.

Alex had his first mapping session last Wednesday. Basically, the mapping process is where they adjust the settings of the speech processor to deliver different amounts of signal to the individual electrodes of the implants, which themselves represent certain frequencies. Shorter version: the sound gets customized to Alex.

The mapping process was yet another straightforward process that I thought would be more complicated. Essentially, our audi picked out six of the electrodes to customize for Alex, which were spread out across the 22 electrode spectrum. She would then go through each one of those electrodes and raise the amount of input / volume until Alex had a reaction, which for him was typically a sour face followed by a mini crying session. Once he did that, the audi would back the sound off immediately but make note of where the signal was that made him react. The process was repeated for both ears.

She explained to us that during our next mapping session, she would do the same thing for another five or six electrodes. Eventually, we’ll have all of his electrodes mapped to his specific response levels, and then it’ll just be a matter of tweaking.

Now, on top of all of this, we’re also still in the process of gradually raising the raw amount of input that Alex is getting. Our audi loaded the new maps onto Alex’s speech processors and gave us four programs to advance him to, same as last time. Our goal is to get him to program four by Sunday, then he has another mapping session on the following Wednesday.

The only other two things that I can think of from that session were that our audi was already working on getting an FM system for Alex, which is HUGELY appreciated because we’ll actually own it ourselves whereas many other parents don’t get to use one until their kids go off to school, and even then, the school would own it. If we have an FM System of our own, we can use it for noisier situations like car rides, loud restaurants, etc. It’ll be a great tool to have handy. The second thing was that our audi had never seen the Hearing Henry headband that we’re using with Alex, and she was impressed enough with it that she wanted to get some information on it so that she could request that each new child who comes through the Early Intervention program might be able to get one. I definitely dug the thought that we might have put something in motion that will help other parents / kids going through the same thing after us.

That’s it for the mapping session.

In terms of day-to-day, not too much has changed. We get a few more sound reactions from Alex, but they’re still pretty sparse at this point – maybe three or four a day. It seems that our best chance in getting a reaction is still to try to say something loud toward him when he’s in a quiet environment. I’m not close to being nervous yet since research has revealed that you don’t start to get those “I can hear!” reactions consistently for months, so at this point I’m happy that we’re getting any of those moments. Still just feeling very grateful that his hearing age is no longer sitting at zero.

The equipment still hasn’t been tough to deal with given the headband approach, at all. Still much easier compared to what we dealt with with the hearing aids. Again, have to credit the headband for that, because it makes it easy to put them on, to keep them on, and to keep track of. His batteries seem to only drop to a little less than 50% even at the end of the day when they’ve been on all day, so no issues there. At the end of the night, I take Alex up to bed with his processors still on, tuck him in, and only then take the headband off. I then swap out the batteries that have been charged into the processors and put the ones that were being used into the charger, then he’s basically ready to go the next day. Easy.

Next time I write I’ll tackle how daycare and recent therapies have gone.

But overall, it’s been pretty manageable. Kid is still a champ.

Great Video out of Stanford on Biological Cure

During a lot of my research on hearing loss and what sort of things are coming down the pipe for the next few years, I discovered Stanford’s Initiative to Cure Hearing Loss. I love just about everything about what they’re doing, down to the boldness of saying that they’re looking for a “cure,” which some sects of the Deaf community would likely be offended with. They’re approaching the biological fix from a few different angles (stem cells, gene therapy, molecular) and have made some pretty amazing strides.

I visited their site today just to check and see if there were any updates, and they actually posted a video that’s about an hour and a half long talking about where they are, how close they are, next steps, etc. It was a great state of the union.

tl;dw version:

  • Multiple approaches are being used because there’s multiple forms of deafness. The one that MIGHT be significant to Alex is a stem cell solution to re-grow the hair cells that may have been destroyed by the antibiotic that was given to Alex after he was born. The neat thing about this is that it’s slightly easier to remedy compared to a genetic issue, because Alex’s DNA is, to our knowledge, healthy, so no genetic issues would have to be spliced out prior to inserting into his ear.  Pretty cool.
  • Lots of parallels made to the Manhattan project and the idea that if you get a lot of smart people into a room, things get figured out quickly.
  • No real figure on when the “cure” will be made available, but the doctors all discussed it like an eventuality.  They didn’t specifically SAY this, but the highest hypothetical figure they gave out was 15 years.
  • Interesting point about how the team feels that they’re getting close to solving issues that big pharma will take notice and start pumping resources into them.
  • The video was clearly a fundraising type of thing, but they cited some pretty real examples of what they could get done NOW if they had more funding now.

The confidence that the team displayed regarding getting a cure out there has me pretty pumped up. I keep on looking at Alex’s CIs and telling myself that his current solution is the worst sounding and most invasive that he’ll ever have to deal with and that it’s all going to be downhill from here, but the idea that Alex could be given ear drops and just nullify the issue… that’s going to be amazing.