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...

Urgent recall...

School holidays! For the first time, I'm experiencing school holidays as a parent. And, i can honestly say, we need it! Jarrah has done well adjusting to school this year, but he's tired, and needs a break...as do i! The school is supporting him really well, he's one of two hearing-impaired kids in his class so his teacher gets lots of help from the Special Ed. unit (including AUSLAN translation of most morning lessons!), and extra teacher aide time. He's making friends, we're starting to hear their names, and his language continues to accelerate. Phew...

We had a little scare in early March, i noticed one Friday that MissJ wasn't responding to things like she normally would, and appeared to not even be hearing her name at a distance of 2ft...and, i began to notice some behaviours reminiscent of Jarrah pre-diagnosis. Of course this happened at about 5:30pm Friday afternoon, so i shot off a quick email to our Aus Hearing audiologist, trusting that they'll get it early the next week. Speech lesson on Monday confirmed my suspicion, that MissJ was hearing virtually nothing, and fortunately Aus Hearing were able to see us briefly on Tues morning. Her middle ears were clear, but there was a significant wax build-up in both ears - not helped, of course, by the fact she wears hearing aids all day! So we went off to our trusty ENT on Fri 16th March, who kindly removed all bar about 10% of the wax, and hopefully that will keep things clear for a while now. Her hearing did return before the ENT appointment, strangely enough, so I'm not sure that it was in fact the wax...

So, we took MissJ back to Australian Hearing for her follow-up appt on Wed 28th March, seeing a new audiologist cos our usual one was away, and the results were somewhat disappointing. She was in good condition and responded very clearly and reliably to the mid- & high-frequency stimuli, but virtually no response was recorded in the low frequencies. (Initial tests were done using "free-field", which just means the sounds are played through a speaker rather than tubes inserted into her ears, which she hates.) According to her ABR results from the newborn hearing screen we expected some response by around 60dB, although her very first VROA in May 2011 showed responses i think at 70-80dB...but this time, nothing at 500Hz. NOTHING. Yet, she continues to develop language (using the word "mine!" for the first time in my hearing *during* the test!!) and doesn't appear to hear any worse than she has previously. They also did some bone-conduction tests to see if that made any difference; I forgot to ask for a copy of the paper so i forget now exactly what the results were, but i don't remember being alarmed at the bone-conduction results so I guess they were within the realms of expectation.

So, we go on the "Urgent Recall" list.

Hooray.

Next appt: when they call us...

How time flies!

Well, would you look at that - it's over a year since my last post! Oops...

Sorry to those of you who have been wanting updates, obviously i've been either busy, or slack, or both...how about this: here's a summary of 2011!

All Australian Hearing appointments standard, no change in anyone's hearing levels. No ENT appointments! (Is that a record?!? Probably.) Jarrah enjoyed Preschool immensely all year, and finally started to accelerate in his language development. One day in Feb 2011, it was like the fog lifted. All of a sudden, on our way to speech one morning, something happened. I don't know what, but it was obvious and instantaneous, and from that moment on he was present in conversations, he listened to what other people said much better, and from then his speech & language really improved. I still don't know what happened that day, but it was a real turning point in his life.

Kaelen continued going to Kindy 1 day/week, and also enjoyed it. His language has continued to develop nicely, and although he had a patch of blocked ears due to illness in the middle of the year, this doesn't appear to have hampered his progress at all.

Jonica grew and changed so much...learned to crawl, started signing in about June (aged 9 months!), and saying "bye-bye" at a similar time, by mid-November (aged 13.5 months) had about a 20-word vocabulary of either words or signs, got her first teeth in December (aged 14 months), and is showing every sign of normal language development.

So far in 2012, things have continued along a similar vein, although there have been some major changes:

- Jarrah started Prep this year! Quite enjoys school, we are *so* pleased we kept him back the extra year, and he's loving all the input. His language is still accelerating, which is wonderful - one of his latest phrases is "I am very surprised!", which makes us all laugh, it's very cute.

- I have gone back to some daytime work, teaching instrumental music in schools. This makes life even more busy than before (if that's possible!), but it's good to "get back into it" a bit

- Due to the previous point, Kaelen is now at Kindy more...this is a mixed blessing. He needs the input also, and i think enjoys the learning, but he's a boy who needs his cuddles so i think he misses being at home with me sometimes

- Also due to my work, Jonica is now in care too; she attends the same Kindy as Kaelen, and they love having each other there even though they're in different rooms. She has settled in nicely and loves the staff there. She's the tiniest one in her room but the other kids seem to love her

The most exciting development in the last few weeks is that Jonica can now walk! She started taking steps 2 weeks ago, and today i think i saw her crawl 3 times...she walked the rest of the day! No more baby in our house, we're into toddler-world!

The only recent concern with hearing is that Jonica's latest Aus Hearing results weren't so good; she had an appt in January but she was out of sorts that day and they didn't get great results, so we re-scheduled...and by then her middle ears had blocked up, meaning she was about to get sick :-( She has duly been sick, and our next follow-up appt is Wed 28th March...hopefully her ears have cleared by then and the results will be normal!

And let's hope i can post slightly more regularly in 2012...