Jarrah - Mater Implant Team appt

Tues 28th Oct - Today we had an appointment with an audiologist from the Mater Hospital's Cochlear Implant team. Our ENT has been making implant noises all year, and because he freely admits he's not an implant specialist he encouraged us to have a meeting with them sooner rather than later, just in case implants would be helpful. He basically said he didn't want to mess us around by saying we didn't need to talk to them, only to find out in a few years time that we should have gone years ago...so i feel like he did the best thing for us.

We got to meet a new audiologist! And just when we thought we were getting to know everyone... Anyway, we sat and talked over Jarrah's history (the whole 2 years of it!) while he played at a table nearby. I got to see a real live implant, both the piece that is surgically implanted as well as the external component. I've seen plenty of the external components at playgroup, but i'd never seen the piece that actually goes in the head :-s It's impressive, really, how much is done by such small components, and it's amazing what functionality such a device gives to people who would otherwise hear virtually nothing.

We chatted, Jarrah played, Jarrah sang "Twinkle, Twinkle, Little Star" (clearly enough that the audiologist recognised it), Jarrah investigated all the computers in the room (as he does!), and Jarrah basically convinced the audiologist by all this that he doesn't need implants.

HOORAY!!!

This is probably the best news we've ever received from an appointment for Jarrah. I must confess that i would have been surprised if we'd been told that he did need implants - he seems to have a fair bit of residual hearing, all or most of which would be destroyed by the implants - but, not being an audiologist or having any experience in the implant area, i really didn't know exactly what to expect. Jarrah's audiograms (hearing test results) apparently make him look like a classic implant candidate, but his functionality seems to be waaaay better than his audiograms would indicate.

So...this presses the Pause button on this option for now. We may need to revisit implants once J starts school, depending on how well he copes with a more difficult listening environment, but at least we have a few years between now and then. No testing was done at this appointment - i think that had been the plan, but once the audiologist saw what Jarrah was doing, and once we said we were due to see Aus Hearing next week, it was decided that tests were not necessary today. At some point soon Mater do want to do a Speech & Langauge assessment so that, if Jarrah's hearing deteriorates in the future, we have a baseline with which to compare.

I think Jarrah gets songs "on the brain", like a lot of people do. I very often hear him singing away during the day, quite a mixture of songs, and i recognise most of them. Occasionally there will be one that i can't work out, but it often comes around again and again over a few days, and i'll eventually figure out what it is. He also shows that he can discriminate between instruments on a recording - if i play a CD that is pure piano music (eg. Suzuki Piano Bk 1) he will move his fingers & hands as if playing the piano, but if i play something that's heavy on guitars or drums (eg. Colin Buchanan) he'll either strum as if playing a guitar or flail his hands as if playing the drums :-) It's very cute to watch, but it's also encouraging, cos i can see that he's getting good timbre information.

Sometimes people with hearing losses don't just have lower hearing thresholds, but they can also have distortions of what they do hear. That has made me wonder on occasion exactly what Jarrah hears, and whether he hears clearly or not. I'm beginning to conclude that he hears reasonably clearly, or without much distortion. For him to make such distinctions of instrumental timbre, he must have enough clarity to be able to hear the difference.

And i've just today realised why continuing with signing is still important for him. For words that sound similar yet are quite different, i'm not convinced that he hears the subtle differences just yet, so doing the sign for those words helps him to understand that i really am saying a different word. I can't remember quite what it was i was saying to him today, but it was a word that could have been confused with another one he knows, and i suddenly realised that at this point in time it is mostly the sign that differentiates between those two words. Because i can't be sure exactly how clearly he's hearing my words, it would appear that the signs will be helpful in allowing him to understand a wider range of words, and prevent confusion. That might seem like an odd observation to make, but it reinforces to me why i should continue learning signs. 

Not that i'm worried about learning more sign, but it helps me to know i'm doing the right thing...

Next appt: Tues 4th Nov, check-up for Jarrah @ Aus Hearing

Kaelen's Aus Hearing follow-up

Tues 14th Oct - nothing unusual to report at this follow-up appointment, except that Jarrah again amazed the audiologists by being far more interested in all their instruments and noise-makers for Kaelen's tests than in the puzzles or toys they were offering him, and also by singing back some of the noises at pitch :-) And no, we didn't get any results worth recording from the tests cos Jarrah helped a bit too much...but we did take new impressions for new ear-moulds (babies grow so fast at this age!!) and setup the next couple of appointments. I think i shall have to have Jarrah visit somebody for Kaelen's appointments, and probably vice versa as Kaelen gets older.

Next appt: Tues 28th Oct, Mater Cochlear Implant Team for Jarrah. I have no idea what's going to happen at this appointment, which is actually a strange feeling, as most of the appointments we have these days are follow-ups, check-ups, or appointments for Kaelen that i've already been to with Jarrah. I don't know if they're going to assess him for implant candidacy, or if this is just some sort of preliminary informationy-type appointment. We'll see...

An unexpected letter...well, sort of...

Thurs, 2nd Oct - taking the kids out for a walk, collected the mail from the letterbox on the way out, thought maybe i could read it along the way. Hmmm, from the Mater, what could that be? Open...newsletter, from the Cochlear Implant Team. Oh.

Our ENT had said he would get the Mater Implant Team to contact us and have a preliminary appointment for Jarrah, just to see if he would get more benefit from an implant than just his hearing aids, even though he seems to function quite well. I hadn't heard anything yet, so i was just waiting for a phone call to arrange an appointment or whatever. Interesting that they sent us a newsletter before we've even had an appointment, maybe they'll call soon...

Next letter - hmmm, Mater also...odd. Oh, "we've made an appointment with the Cochlear Implant Team for you", nice, thanks for checking that it was convenient, good thing it is. Tuesday 28th Oct 11am, about 4wks time, in between Kaelen's Aus Hearing follow-up & Jarrah's next Aus Hearing check-up. Well, that just completes the circle, doesn't it, at least we'll have some news for the Aus Hearing ppl.

Well that was a bit deflating. A clear reminder that major surgery is still a possibility, an "in-yr-face" reminder that all is not as it should be with Jarrah's hearing, despite him functioning so well, that this is a decision that we may need to make one day. *Sigh*, i guess this is the job of a parent, to make the best choices possible for a child while they're unable to make those choices for themselves, and this is a toughy. I know there is some debate around as to whether parents should have the right to make these choices, and i don't plan to enter that debate here, but even just looking at the possibility makes me sad, knowing that such things are necessary.

I know, you're going to say, "just be thankful there's something they can do, 50 years ago they would have been institutionalised, isn't technology amazing these days with what they can do, be grateful you found out early and do something for them" - yes, all those things are true, and there's always someone worse off than me, i'm not claiming to be the most hard-done-by person in the universe...but that doesn't make actually dealing with it any easier. I'm sure every parent who faces this challenge finds it hard - otherwise it wouldn't be a challenge, by definition, right? I guess it just felt a little out-of-the-blue because i was expecting a phone call, expecting to be consulted in the appointment-making process...yeah, that's probably it, it happened in a very different way to what i expected, caught me off guard.

So, the saga continues, a new set of experts to get to know...