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...

Kaelen - has hearing aids!

Tues 30th Sept - Kaelen turns 3 months old tomorrow, and today was his hearing aid fitting appointment. Such a miracle that technology now allows a 3-month-old hearing-impaired child full access to sound...20 years ago nobody would probably have known the 3-month-old child was hearing-impaired at that age! The molds look so tiny compared to Jarrah's...i guess his ears are quite a bit smaller, 2 years makes such a difference! The units are the same colour, so i've written their first initial on each one so i can tell them apart.

Kaelen responded quite well then they were first switched on. There's a lot of messing about in the appointment before we get to the 'switching on' bit, mostly setting up the units, checking that the molds fit properly, checking that the tubing (that joins the mold to the unit, that pipes the sound into the ear) is sitting correctly so the hearing aids stay on properly, and then cutting that tubing to the correct length, talking through the safety aspects of using hearing aids with children, talking through the various functions of the hearing aids (some of which are disabled for children)...all the information, legal & procedural stuff. Then, there is the moment of truth - the aid is inserted and the battery clipped in. Pause, while the hearing aid powers up. Sound!

Kaelen was having a feed at the time his first aid was switched on, so we could see his face quite well. He didn't seem stressed about it at all, although his eyes definitely got wider :-) "Wow, the world sound like *this*?" The second one was not as dramatic, probably because it just complimented the first one, but there was definitely a reaction, and not a bad one, which is what we like to see. Then they do some quick checks with loud noise-makers to make sure he's not uncomfortable with those loud sounds, and if it's all good then that's it - we're done!

Today was not quite as emotional for me as i thought it was going to be...perhaps i processed a lot of that emotion during these last 2 weeks, knowing it was coming. Or perhaps this is just a lull, and it'll all hit me again tomorrow morning when i have to put 4 hearings aids into 2 children, not just 2 into 1...i don't know, but i must confess that i was fearful that i would cry all over the audiologists. Fortunately, that didn't eventuate, i was calm, cool & collected the whole day. Let's see what tomorrow brings...

I'm really hoping that getting hearing aids this early will mean that Kaelen will develop speech reasonably normally. It's hard to tell what's going to happen, and we don't know if there are any distortions along with the volume loss, so all we can do for know is hope, pray, and do our best to give him the best possible chance. Hopefully his brain will switch on to listening in these early months and it won't be the effort for him that it is for Jarrah.

For reference, i thought i'd upload this Frequency comparison chart. It gives a bit of an idea of what sounds fall in what ranges (both frequency & volume), both speech sounds and other environmental sounds, and therefore what sounds should be accessible by people with certain amounts of loss. This chart makes no sense for Jarrah, he constantly makes sounds that are allegedly outside his hearing range, so we just nod and keep going, but i include it anyway as i find it an interesting guide.

Next appointment: Tues 14th October - hearing aid follow-up appt for Kaelen

Kaelen - Australian Hearing appt

Wed 17th Sept was Kaelen's initial appointment with Australian Hearing. At this initial appointment the usual procedure is to perform a few tests to confirm the results sent through from the Mater and decide on a course of action (usually the recommendation of hearing aids). For Kaelen this was pretty much a foregone conclusion so the testing was routine, but at least it showed the same kinds of results to the Mater, so again, his hearing appears to be stable - which is a nice change!

Nana accompanied us to this appointment, which was nice - good for her to see what happens, and handy to have someone to hold Kaelen when i needed to sign papers or do other things. :-) I didn't realise that Kaelen needed to be asleep for the testing though, so we were there at a time when he was fairly awake after a feed. Fortunately, he's a sleep-anywhere kid, and by the time they were wanting to begin the testing it was getting close to his sleep-time anyway, so they set us up in the sound booth (all testing is done in sound-proof rooms so prevent extraneous noise from interfering) and left us for 10mins to get him to sleep. He was a bit wiggly, both tired-wiggly & tummy-wiggly so after a few mins i put him over my knee to ease the tummy pains...and he was soon fast asleep :-) Lucky i never had to do this infant test with Jarrah, there is *no way* he would have done that...

The testing showed a 50-60db hearing loss, which is exactly what we expected, so then it was on to choosing colours for his behind-the-ear unit and making impressions of his ears for the molds. I had wondered about getting a different colour unit to Jarrah so i could tell them apart easily, but in the end i just went with the skin-colour again, and we'll put stickers or nail-polish or something on them to tell them apart (might even put their initial on the unit so that Jarrah can tell which is his and which is Kaelen's too...just thought of that!). Impressions are taken by squirting a nice cold goo into the ear canal and around the outer ear which then needs to be left to set for about 2minutes - an eternity to a small child! - so that wasn't entirely pleasant, but it's got to be done. Oh, and because Kaelen's so much smaller than Jarrah was at this point, we'll be needing to get new molds as he grows, which will probably be a much more regular event :-s Great...

So, back to Australian Hearing on Tues 30th Sept for hearing aid fitting, then a follow-up appointment on Tues 14th Oct to check and make sure they're doing ok. On 1st Oct Kaelen turns 3 months old, so he'll have good access to sound a lot earlier than Jarrah did - hopefully this will mean we can avoid some of the speech delays and discipline issues we've had with Jarrah along the way...although i think it will be more difficult seeing hearing aids on my baby's ears this time, he's so little...

A side-note, humourous but totally irrelevant - i got my wedding rings re-sized last week, as i hadn't been able to wear them since Jan 2006 while i was pregnant with Jarrah. After he was born i took a while to lose all the baby weight, but even when i had i found that my knuckles had spread a bit and i still couldn't get my rings on! Since we were thinking of having another baby fairly soon i didn't bother about getting them re-sized at the time, but this time i thought i would since i'm not carrying much extra weight. They were a size J, and they only needed to be made one size bigger, up to a size K - who would have thought that my kids would be imprinted in my ring sizes?!? :-)

Next appt: Tues 30th Sept 10:30am Australian Hearing - Kaelen's hearing aid fitting

ENT - double trouble :-)

Well, no trouble actually - thankfully!!

Tues 9th Sept was the infamous double ENT appointment, both boys to be checked out. Dr checked Jarrah's grommets - all good...hooray!! The left side had some discharge going on at the time of surgery, but it was all cleared up now and looking fine. I reported Jarrah's increased responses as expected, and fortunately Jarrah was much more talkative during today's appointment than he's been during any previous ENT appt's, so Dr got a much more accurate picture of what he's doing...which is good. We have still been referred to the Mater Cochlear Implant team, just waiting to hear from them.

Kaelen was asleep at the appointment time (surprise, surprise! He sleeps anywhere, almost anytime...), so Dr was loathed to wake him to have a look in his ears, but he was due for a feed anyway so i said, "Go ahead! If you don't wake him, i will :-)" Apparently Kaelen has reasonably large ear canals, and nothing appeared to be amiss so far. There's nothing that can really be done surgically at this stage, he's far too little, so it's a matter of wait-and-see, get hearing aids from Aus Hearing (they'll be able to compensate for the conductive loss anyway), and let's check him again in 3-4 months time.

So, nothing major to report really...which in some ways is a good thing! The only disappointment of the day was that our friends who were going to accompany us into town and picnic with us afterwards were unable to make it due to late illness...would have been nice for the kids to have a run together, but nevermind, maybe next time.

Next appt: Wed 17th Sept 8:15am - Kaelen @ Australian Hearing

It's amazing what deaf kids can do...

Jarrah was hearing exceptionally well today. He wore both hearing aids yesterday, but today he seemed to be doing well without them so we got a bit lazy and didn't put them in...and he still said new words that we hadn't heard before, like "hot", and "squirrel", and "weasel". With no hearing aids. And they actually sounded something like the word. Go figure.

The Aus Hearing audiologists were amazed some time ago, when we discussed what sort of toys Jarrah enjoys, that he loves musical instruments. Considering his test results, they were surprised he was getting any benefit from them at all, but he truly loves banging on the piano 

(singing along, of course!), or pretending to play a violin with two pencils (correct hands most of the time), or drumming with two pencils (Mummy's favourite...not!), or whacking his toy glockenspiel. He sings many different songs, often spontaneously, and has recently fallen in love with the stereo - it's often the first thing he turns on in the morning (except when Mummy & Daddy object at 6am!!), and then sits right in front of it and listens intently for a few minutes before finding something else to do.

For his 2nd birthday, we bought him a little ukulele, cos he loves watching me play guitar and always wants a turn. Yesterday I got out my violin (for the first time in quite a while :-s) and so he went and got his uke to play along :-) Today, just before dinner, Daddy and the two boys were playing downstairs and I went down to tell them dinner was ready, just in time to see Jarrah bringing his uke out to where Daddy & Kaelen were. It was clear he wanted to play, so i got him to sit down and he proceeded to serenade Kaelen, strumming most gently and singing away...

Then, he decided it was Kaelen's turn to play the uke...

Very cute, what a considerate boy we have! And all this still without hearing aids!

It's amazing what deaf kids can do...