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.