A new type of marathon...

I've learned something over the years. Always allow about an hour more for Aus Hearing appointments than the diary says you'll need. Sometimes I still forget, but these appointments reminded me of this truth.

Mon 29th Oct was a follow-up for Kaelen (Mr4) after having slightly blocked ears back in August. Afternoon appointments are a bit of a nuisance now because I have the 3pm school pick-up to work around, so a 3pm appointment really means have lunch at 11:30, get Mr4 & Miss2 into bed by 12, get them up at about 2 or shortly after so we can arrive at school by 2:30, sign Mr6 out and still get to our appt close to 3pm. Who knew a simple hearing test appointment required so much planning?!? Anyway, his results were great - he's never fluctuated since the day he was born - so that was the easy bit.

It's a few months ago now so some of the details are a bit fuzzy, but I think we did impressions for new moulds for Jarrah while we were there, and I think I had a question about Jarrah's FM not working properly or something...whatever it was, it necessitated Jarrah's hearing aids having some attention also, which meant extra time and waiting around. Not too bad, although a little longer than I'd expected, and I had left the roast in the oven at home cos I had expected to be home by about 4:30-5pm. One thing led to another, there were some technical difficulties, and finally i think at about 4:45-5pm(!!) Jarrah's hearing aids were brought out finished; I went to put them in and discovered that they simply didn't work.

At all.

Not very useful for a schoolboy! Fortunately i had checked them immediately in the waiting room, so I called the audiologist back again, who was most apologetic, and we proceeded to wait. Again.

Eventually the audiologist returned, saying she couldn't make them work either, she'd have to get the technician to have a look at them and determine whether it was the software on her computer or the hearing aids themselves (they had given her some trouble as she had been trying to adjust them, hence the delay in the first place!) and we'd have to take some loan hearing aids as it was after 5 & the technician had gone home. Of course that meant that the loan hearing aids then had to be setup with Jarrah's prescription, and so we waited. Again.

Finally, they were ready! By now it was about 5:30-5:40pm, the kids were tired, hungry & dirty (bath time is 5pm in our house) and my roast was quickly becoming a BBQ...so we stepped out into the peak-hour traffic and I think we made it home by about 6:10pm. That was a marathon 4hrs from leaving home to arriving back again, just for a 1hr Aus Hearing appt at a centre that's 15mins from our house!

I did rescue my roast, it was not quite as charred as I thought it might have been, and we all slept well that night...

The following Monday, 5th Nov, was Jonica's Aus Hearing follow-up. Nowhere near as eventful (Praise The Lord!) and Jarrah was at school, so as I recall everything pretty much went to plan. Her results, while no better, were at least no worse than they had been in May, so it seems she hadn't had any fluctuations in the last few months. *Phew!*

Next time: January checkups, another marathon!

Wow, is it 2013 already...?

Oh dear...it seems I have been very slack (or is that busy?) and haven't posted here for a ridiculously long time. Quite a bit has happened in the last 6 months, so it might take me a few posts to catch up on everything.

Let's see, where were we?

Ah yes, more follow-up appointments...August 13th saw hearing tests for both Kaelen & Jarrah. Jarrah was fine, sailed through with no problems, and thankfully his hearing is still stable. That marks 3 years without a change! Woohoo!!

Kaelen did well but his middle ears were slightly blocked, so they couldn't be sure the results were accurate. Bother. This means coming back in about 8wks time (read: 12wks because there are no appts available) to redo the test. And, because Australian Hearing don't open their appointment books more than 3 months in advance, sometimes we can't actually make the next appointment because the month isn't open yet! Fortunately we were able to do that today, and make Jonica's next appointment as well. So, back again in late October & early November.

Speaking of Jonica, I did notice something with her around this time. I was sitting with her after a sleep one day reading a book, but we hadn't yet put her ears in. If this is the case I usually speak directly into the ear, as the kids can hear me if I speak in my normal voice at point blank range like that. We were looking at a book of family pictures and got to a page which had pictures of 'NanaPop', so of course I was pointing and saying 'NanaPop' right into her ear. She, like a good girl, was copying me as best she could but the best she could come back with was 'Nana-o', and the 'o' was virtually whispered. That gave me a really car indication of hat she actually hears without her hearing aids. 'P' is quite a high frequency sound, so of course that sits in an area where she seems to have very little hearing, and this little impromptu speech test apparently confirmed that. Poor sausage.

Tune in again soon for the next update, 29th October & 5th November Aus Hearing appointments...

Crossing the line

I think it's happened. In fact, I can almost pinpoint the day it happened. A line has been crossed...a line I could always see, but was never sure if we would actually get there. Kaelen's language has, in the last 3 weeks, overtaken Jarrah's. I wondered if this might happen...I just didn't know when. During the 2nd week of our recent school holidays, while J was away, I found myself teaching K words and concepts that I hadn't yet taught J, fully confident that he would understand them and retain them, which he has. And I can tell you the first of those words too, cos I realized I was crossing that line as I said the word. It was "burrs", like you get in your clothes from Dandelions, or Cobbler's Pegs. This is not a line of choice. It's not because K is somehow brilliant, or J is mentally deficient. It's just a consequence of whatever language delay / disability J has, that K doesn't have. And I'll confess it made me a little sad, to realize that my 4yr-old now has greater command of his native language than his 6yr-old brother. As I've already said, I wondered if this day might come...I just thought I'd see it coming instead of only realizing it had come once it was already here. On a more positive note, J has an excellent speech pathologist at the moment. We first met her through the LOCHI study being done by NAL (National Acoustic Laboratories) in Australia, but she's now working for another service provider and we've crossed paths again. J is non-standard, there are just no two ways about that, and she's working really hard to try to understand exactly what's going on with him so she can help him most effectively. I really appreciate that; not because our other speechies have been bad, but they've all taken a fairly standard approach, and figured that things would come good in their own time. This one can see that things are not coming good in their own time, and that there is something unusual going on. She's working with him weekly at school, and I just love the way she listens to me, and takes my examples of difficulties we have seriously, instead of just saying "yes but kids of this age are like that". I just hope she finds some answers soon...he continues to make progress, but it's about time for another break-through... Next appt: Mon 13th Aug, J & K Aus Hearing check-ups

MissJ's new ears!

Pictures to accompany previous post...

Yes, the moulds are different colours, the lighter one is a spare one because we managed to lose one of her old hearing aids 4 days after ordering the new ones...

And here's a size comparison...old hearing aid obviously on top.

They still look a bit big on her, but we're all getting used to them. Her language has improved already; she's beginning to say things that she had said months ago but stopped...to be honest I hadn't noticed she'd stopped saying them. I had noticed that she hadn't really said much new in a while, but not that she'd stopped saying some things! And tonight she detected all 7 Ling sounds, which she hasn't done in quite some time. Only struggled with "sss", but that's to be expected given her 4kHz situation...so overall, a very positive step!

Next appt: Fri 8th June Aus Hearing follow-up

Superbaby has new ears!

Monday 28th May - Australian Hearing appt for fitting of new hearing aids. I'm not too sure what to say about this appointment...it wasn't particularly eventful, apart from the obvious. We were late (cos Superbaby filled her nappy to overflowing and I hadn't, against my better judgement, packed spare clothes so we made a quick detour home...then the audiologist was running late so our lateness didn't matter at all. We went in, got the hearing aids, audiologist checked to see if previous moulds still fitted, as the tube length might have been different, took impressions of Superbaby's ears for new moulds as the remaining one is getting a little small anyway (did I mention we lost a hearing aid? About a week ago? Lucky I knew we were getting new ones...), then they made some loud sounds to see if any of them particularly bothered her...which they didn't. So, everything pretty much as expected. It soon became clear that MissJ has in fact been missing quite a bit for a while. She spent the first 10-15mins making lots of low-frequency sounds - "Aaaaaah! Ooooor!" - then later in the afternoon I heard a few high-frequency squeals - "Aha, she's found the high frequencies!" She did take the ears out a few times in the first couple of days, might have been a bit intense at first, but she seems to be adjusting well. They're much bigger than her old ones (picture coming), but I am hearing a difference already. On Tuesday afternoon we came home and I said, "OK, everyone upstairs!" and she repeats, "up-air!!"... at that point i remembered that she had been saying "upstairs" a couple of months ago...but had stopped, and I hadn't really noticed. This evening I went to write something down that she said, and realized that I haven't written down anything remarkable for her since early March - about the time we noticed her hearing almost completely disappear. It would seem that she has been deteriorating but we just hadn't noticed... Anyway, they're here, they're pink, and they're big...but they're working! It's so nice to have good response from her again... Next appt: hearing aid follow-up (to make sure they're working well for her) Fri 8th June

What *is* that in there?!?

Those of you who are on facebook will have seen my commentary on this week's events. For those who aren't, here's a summary.

Last Friday 18th May, during lunch, Kaelen suddenly cried out, "My ear! My ear! It hurts!" and burst into genuine tears, indicating pain slightly behind and below his right ear. Wow, that's never happened before! It seemed to settle down, but I decided to look in his ears anyway, to see if i could see anything that might be causing pain. In the right ear, all I could see was a giant ball of wax that's been there for quite some time but was now positioned quite close to where his hearing aid would sit. Not terribly helpful, for many reasons, not the least of which including the fact that I couldn't see any further into the ear!

Looking in the left ear gave me quite a surprise. I wish I'd been able to take a photo of what i saw, but despite all my technology i couldn't make it happen. There was a *thing* in there, a UFO, an Unidentifiable Foreign Object. Small, obviously, cos it was in his ear - but with a clear shape to it. Looked like plastic, but hard to tell with an untrained eye. Whatever it was, I was pretty sure it didn't belong there, and probably should come out as soon as possible. There was no way I was going to attempt to remove it as it was a long way in, and virtually occluding the eardrum. So I made a Dr's appointment for that afternoon, hoping we could deal with it quickly.

Because I just wanted *any* appointment, I didn't care which Dr we saw - our Medical Centre has 6-8 Dr's available - so we did not see our usual GP. Sometimes I wonder about the quality of otoscopes the GP's use, cos the Dr we saw on Fri afternoon diagnosed Swimmer's Ear infection (because the ear was moist, and should have dried out since swimming that morning) and prescribed drops. I thought that was a tad unusual, but was in some way relieved that it was apparently simpler than I thought.

We used the drops, I'll confess slightly intermittently, over the weekend, and waved Daddy goodbye on Sunday night for a 2-week working stint in South Australia. On Monday night, before I put the drops in, I thought I'd take another look in this left ear and see how it was progressing...after all, if it was an infection I should see some change, either due to the use or lack of drops.

No change. Still looked exactly the same as Friday lunch. Hmmm.

Now I'm pretty convinced we don't have Swimmer's Ear, and that Fri's Dr either didn't want to deal with it or really had no idea what he was looking at...or had such a poor otoscope that it genuinely looked like an infection to him. Must ring Dr's again in the morning for a 2nd opinion, aim for our usual GP this time.

Tuesday is Kindy day, but I manage to secure an 11am appointment...and co-incidentally take the day off work sick myself. Our usual GP looks and umm's and ahh's, thinks maybe it's canal debris...until I mention that I think it looks like plastic, something with a well-defined shape, and that it hasn't changed since Fri lunch...at which point her eyes light up and she agrees, yes, this does look like a foreign object! She quickly writes a referral to Mater Children's Emergency Dept, and off we toddle into the city - via the chemist for some Codral Cold & Flu for me!

Fortunately we don't have to wait long at the Mater and are seen by yet another GP, who agrees that there is something in there and that the ball of was on the right side really should go. She attempts to retrieve the wax but it must be further in that i thought cos Kaelen squirms and wriggles and is generally uncomfortable, preventing her from reaching the wax. She decides to try the other side, as it's i ways more important to retrieve, but it's even further in and she is again unsuccessful. Not wanting to distress Kaelen any more, she decides to call an ENT surgeon to see if it can be suctioned out, and we are again in the waiting room.

Sadly, within minutes, she finds that all the ENT surgeons are in theatre, and won't be available for hours. She send us home, saying they'll make us an appointment and send us a letter telling us when it will be.

Oooh, snail mail - jsut the thing for dealing with urgent medical situations...

On the way home my Mum rings me and we discuss the possibility of a visit to our private ENT. I had suggested this at our 11am GP appt, but had decided to follow our GP's advice and go to Mater first. Mum convinces me to at least ring out ENT and see what our options are. They're getting to know us now :-s Apparently he's not at his city clinic this afternoon, but if we can get to his other clinic then he could squeeze us on to the end of the day at 5:15pm. Sold. How do we make it work? I dunno, but we'll figure it out. I buy Kaelen McDonald's for lunch on the way home cos he's been such a good boy...even thought that means no nap today :-/

After much to-ing & fro-ing and other logistical discussion that you don't need to hear, Mum & I get Kaelen to our ENT's alternate clinic at about 5:30, knowing that he was already running late when I made the appt 4hrs earlier, and tends to be generous with his time anyway :-) He took one look and was in no doubt that it was a foreign object and should be dealt with as soon as possible...and that given Kaelen's new-found unwillingness to have people look in his ears (since the removal attempts at Mater), it would be best done under anaesthesia. After some musing decided he could probably fit us in to his day of surgery at a Brisbane hospital the next day.

...the next day!

Best answer I could have hoped for.

So, after more logistical discussion, Kaelen had an impromptu sleep-over at Nana & Grandad's house (my Mum & Dad), and was admitted to hospital at 7am the next morning. Wax was removed from right ear. Right middle ear was also found to be full of fluid, so that was removed. Small, round, grey, still-unidentifiable object was removed from left ear. Success! Now, what effect has this all had on his hearing?

A little hard to tell, but Mum & Dad thought they were hearing more clarity in the afternoon than the morning. But when I asked him if his ear was still sore, he said, "No, my ear is all better!" Even this morning he's still telling me that, "this one and this one (pointing to each ear) is all better!" That's what we like to hear!

So, after a 2-day adventure that really started on Friday, I'm pleased that Kaelen now has 2 clear ears! And they're "all better" :-)


Tune in next week for Jonica's new hearing aid fitting, Monday 28th May...

Now it really is urgent...

Well, maybe I misunderstood our last appointment. I thought we were on the Australian Hearing urgent recall list for Jonica, as it seemed her hearing was changing dramatically, but i think I ended up ringing them! Anyway, whichever way it worked out, today - Mon 14th May - was her follow-up hearing test to validate the slightly unexpected results of her last test in late March. See this post for what that was all about.

I nearly postponed today's appointment. All the kids have had mild colds in the last 2-3wks so i thought MissJ might have blocked middle ears and so the testing would be pointless, but as it turns out her middle ears were clear - hooray! Some negative pressure, which indicates slightly blocked Eustachian tubes, but clear middle ears is the most important thing.

The last 2 tests have been in what's called "free field". This is when the sounds are played through speakers into the sound booth. In this situation, it's impossible to determine which ear is hearing the sounds, but it indicates the level of hearing in the better ear. To test individual ears, small tubes ("inserts") are placed in the ear and the sounds are delivered to one ear at a time. This is how hearing levels in each ear at different frequencies are determined.

Today, we went the whole hog :-) After checking MissJ's middle ears, we went straight to the inserts and she tolerated them beautifully, didn't touch them for the whole test! She had a great time stacking cups and reading books and keeping lightly entertained (toys that are too interesting affect her willingness to respond to stimuli) while our friendly audiologist played a range of sounds from 250Hz to 4kHz. K sat quietly at first, but soon decided it would be more fun to go and "help" so he went into the other room and entertained himself for the remainder of the test.

I didn't really think we had noticed much change in MissJ's responses to sound. She's still been learning new words and coming when called (mostly!) and all the things we expected. We had never looked at each other and thought, "She's just not hearing us!"But today's audiogram tells quite a different story. It would seem that our ability to use the word "mild" has been curtailed, and a few new words have had to enter our vocabulary, "Implant surgeon" being among them. And now that i think about it, MissJ has been louder in the last few months than previously, and not *quite* as responsive as she was last year. So although she has continued to progress, the change has been so gradual that i guess i haven't really noticed that much.

She's not yet an implant candidate, but today's test results showed that her hearing levels are far from stable. In the late March free-field test, she showed no observable responses at 500Hz, yet today she consistently responded to sounds around 70dB. Her mid-frequencies (1kHz & 2kHz) were about the right "shape" as predicted by her newborn tests, but still dramatically different; instead of 40dB & 50dB we're now in the 70-90dB range. And 4kHz? This is where it gets scary. It seems her left ear was responding in the previous free-field tests, at a paltry 90dB(!). But the right?

120dB.

!?!?!

That's about the noise of a jet aircraft taking off. Louder than is really comfortable to listen to for more than a few seconds. 130dB is the threshold of pain - although I've also seen it listed as 120dB. Her newborn test predictions put 4kHz at about 70dB...not 120!

So, there are some changes to make. Firstly, she needs stronger hearing aids. Her cute little Nios Micro's jsut won't do the job for a hearing loss this severe, so we've ordered a pair of Phonak Naida's, like J's but a newer model which was jsut released in April. The biggest benefit of this is that it will give her access to an amazing feature called Sound Recover, which somehow (I know not how!) brings those super-high frequency sounds that she misses down into a range that she can hear, thus giving her access to those sounds.

Secondly, it has been recommended that we talk to out ENT about perhaps having a consultation with an implant surgeon...not to *do* anything jsut yet, but to get some opinions and begin the conversation, should it need to continue. Personally, I'd like to wait and see a little bit. Jarrah's hearing fluctuated til he was 3yrs old, so I'd like to give her til at least then just to see what happens. If nothing changes in 12 months, then maybe we're fine as we are. If other frequencies start dropping off the page, then we may need to do something. If things improve, we can always turn the Naida hearing aids down :-) Wouldn't that be nice?!?

So, another urgent appointment, but this time it really is urgent - Monday 28th May, back at Aus Hearing, fitting new Naida hearing aids. I really hope we get to turn them down one day...