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!

Advertisements

First Appointments: Teacher of the Deaf / Speech Therapist

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

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

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

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

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

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

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

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

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

Some More Random Updates

I really have to get better at posting these more often. This probably won’t be the last time I open a post this way. The site stats are yelling at me.

At this stage of the game, we’re a little frustrated that Alex doesn’t have his hearing aids yet. We’re not angry at anyone in particular, just the situation. Not only do we want Alex to start having a little more access to sound, but we don’t want to bump up against any of the FDAs requirements that hearing aids be used for x amount of months (we think it’s three, but six is commonly mentioned as well) before he’s able to get implanted (if, IF he’s eligible). Getting him going quickly is hugely important to us because of all of the benefit he might be able to get. I know I’m getting ahead of myself, but I’ve read a lot of stories about kids being age-appropriate with their speech at TWO. Sounds incredible to me, but to have any of his milestones put at potential risk because paperwork isn’t being shuffled around quickly enough is frustrating.

Good progress is still being made, though. An hour from now Alex will have his first physical therapy session. I’ve already mentioned it, but Shannon and I think that he’s gotten MUCH better with the issues that the PT evaluator looked at a month ago – the biggies were neck / head control, and more importantly, a pretty staunch preference to look to his right side. It’s still clear at this point that Alex favors his right, but we still think he’s made some pretty good strides there. When the evaluator first looked at him, he basically refused to look over to his left. Now he can easily do it, but his preference is pretty clear. We’re looking forward to picking up a few more exercises that might help him out in that department.

On the genetics front, Alex’s blood was supposed to be taken last Friday at a Quest. When I got there, though, they explained that they didn’t have the right needles nor was anyone on staff who could do a baby draw. That was particularly frustrating, but I knew it likely wasn’t the fault of the person telling the news. Still, though – I had to schedule it, and I even had to tick a little marker that said “Pediatric Blood Draw” or something similar. Come on. Gonna have to reschedule that one and I’ll be sure to call a day in advance to MAKE SURE that they’re ready this time.

Our service coordinator (she’s sort of the captain / project manager of this whole early intervention gig) has reached out to our teacher for the deaf and speech therapist, but they haven’t given us a ring yet. Looking forward to getting those going, which should hopefully be this week. I’ve spoken with her a few times now and I think we’re going to get along well, which is important.

What else.  Alex had a healthy four month appointment at our pediatrician, which put my mind at ease a bit. Shannon and I are in a pretty constant state of concern that something else is going to pop up, so every little win like this is one we’ll take.

Emotionally, it’s still an up and down thing. My rational side is very upbeat. The new Cochlear N6 implants are getting all sorts of positive notes dropped on the boards here and there, which reinforces my whole perspective that as long as it’s just hearing and as long as he’s eligible, we’ve just gotta get him on the path and his experience will only improve over time. The more emotional side of me still thinks the entire thing is still bullshit, of course. I’ve noticed lately that I’m more sensitive to tragic movies now. I’ll completely admit that I watched “West Side Story” today during the kids’ nap and I was actually bummed for a few minutes after it ended. Ha. Whenever I think about how much this all sucks, though, much of it washes away with a few smiles from Alex. He’s constantly reminding us that he’s still a happy little guy, and that truly helps.

Better wrap this up and finish cleaning for the PT. I’ll give that its own writeup soon.