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!
Born Into Silence 