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...

Emotions are weird...

OK, I'll admit to a tinge of sadness today.

A whole bunch of Jarrah's little friends/peers went off to Prep today for the first time...and he didn't.

I know it's for the best, i know that we're doing the right thing in holding him back a year...but i couldn't help feel just a little bit sad that it should have been him enjoying his first day at school, it should have been him in that little school uniform, it should have been me getting all emotional at my baby growing up, if only it wasn't for his ears...

I also know that i get the privilege of having him at home (mostly) for another year, that he loves Preschool (after 2 days!) and that he'll cope better with the school environment, that he'll get his turn and it'll be alright.

I just couldn't help but feel a little bit sad...

A quiet time of year...

Although life marches on, we're finally at the point where the appointments will begin to slow down a little - the first 3 months are the craziest with hearing impaired kids! We've finished Audiology, we've finished our initial round of Aus Hearing appts, all the big ones are over...now it's just maintenance. Consequently, this post will cover about 4 appointments :-)

Mon 13th Dec - a simple Aus Hearing appointment to take impressions for new moulds for Jonica. Because babies grow so fast, they out-grow their hearing aid moulds in about 2 weeks! Each set of moulds takes about 2 weeks to arrive after being ordered, so in a ironic sort of way the new moulds you just received are immediately too small...but better than the ones you had from 4 weeks ago! Anyway, impressions taken, moulds ordered, won't arrive before Christmas but hopefully not too long after.

Sat 18th Dec - follow-up osteopathy appt for Jonica. She's straightened out a bit since the last appointment but was still a little crooked. Sounds like some reasonable changes were made this time too, and she's been much straighter since. Hopefully that'll be it for now.

Mon 10th Jan 2011 - Aus Hearing checkup for Jarrah. This is the return appointment after his November checkup at which we discovered that his right middle ear was still blocked, and J has since had grommets replaced. Again, i approached this appointment with an open mind in terms of what results J might return...you never know what's going to happen with that kid :-) Fortunately J's been entirely well for most of the time since having his grommet surgery, which is a hopeful sign.

J was tested on his own while i minded Kaelen & fed Jonica in another room. He returned surprisingly quickly and his results were, for him, fantastic! No real change from the last set of clear results, which is great - all frequencies between 60-70dB. Back in the fluctuating days it was common for his 4kHz results to be closer to 80-100dB, so to have him responding to those high sounds at 60 or 70dB is just fabulous...means he has what's called a "flat loss" rather than a "sloping loss", because the lines on his audiogram are basically flat, instead of rising or falling.

Due to kids growing (as they do!), we had 3 sets of impressions taken today also :-D Jarrah's have been starting to not seal so well lately, and Kaelen's last set were not very good anyway - 2 different colours, & 2 different materials! Jonica was due for her next set, and was very co-operative today, didn't complain too much about the cold green goo being squirted into her ear canals...

Wed 12th Jan - today was supposed to be J's post-operative ENT appointment...except that part of the Brisbane CBD was under water & the rest had no power...so this appointment has been postponed. It's been an incredible week with unbelievable flooding in South East Qld...fortunately our house is well out of the way of any floodwaters, but so many have lost so much, it's truly hard to comprehend. Our thoughts are with those whose lives have been almost literally turned upside-down...

Next appt: Thurs 27th Jan - moulds for Jonica

Fri 28th Jan - post-op ENT for J

Jonica - Audiology 3 with complete Air Conduction results

Thurs 9th Dec - OK, so it's taking me a while to get to these posts...it's an interesting journey this third time around, not as emotional as the second time. I think that because throughout my pregnancy with Jonica I was preparing myself to have another hearing impaired child I've found this time a lot smoother. While pregnant with Kaelen, i hoped so hard for a hearing child that when that didn't happen, it was a very emotional thing, i felt very let down (as evidenced by my blog posts from that period after July 2008) and every appointment was a reminder of that. This time, as i've said before, i went into this pregnancy expecting a deaf child so it's been no surprise, and there's been very little adjustment required. The appointments just happen - they have to! - they're not out of the ordinary or new or scary, they're just normal for us, there's nothing riding on them, there's nothing much to "look forward to" or "hope for"...the loss is there, we're ok with it, let's just do what needs to be done to help all the kids get on in life the best they can. So, sorry it's taking me a while to get to these blog posts, each appointment isn't such a big deal anymore...

Today was the finalisation of Jonica's air conduction testing. Last time we were there she was sick and coughing and all blocked up so there was no point doing any air conduction testing as the results would be incorrect. Today, however, her ears were perfectly clear so it was a great day for testing!

The audiologist we saw previously was away so we saw another today - who happened to be the same one who did Kaelen's audiology after he was born! So it was nice to see another familiar face :-) Results started coming in the same as the first set of air conduction results, so that was great - no fluctuating levels!

Here are the final results: (all have a margin of error of +/-10dB; Pass = 20dB)

Air conduction Right:

500Hz = 60dB

1kHz = 50dB

2kHz = 40dB

4kHz = 70dB

Air conduction Left:

500Hz = 60dB

1kHz = 40dB

2kHz = 50dB

4kHz = 70dB

For Bone Conduction & TEOAEs, see previous posts.

This is described as a "mild to moderately-severe to severe hearing loss". Hooray! We can still say the word "mild"! It's still not as severe as Jarrah's or Kaelen's, and i can see that in our interactions with MissJ when she doesn't have her ears in. There's still a difference once we put her ears in too, but she responds much more without her ears than the boys do.

Yay! Got that bit nailed down...just keep walking...

Next appt: Mon 13th Dec - Aus Hearing, impressions only

Then: Sat 18th Dec - Jonica Osteopathy

Grommets, take 3

Wed 8th Dec - Today Jarrah had his third set of grommets inserted. The right grommet from the previous set came out about 12months ago while the left one was still there, but his right ear has been blocking up again. Back in August we were at Aus Hearing for Kaelen & they checked J's tympanometry while we were there; his middle ear was blocked up then, and we were advised that if it was still blocked at his November check-up then we should return to our ENT. This we did a few weeks ago, and it was decided to replace both grommets.

Being older this time, and with more understanding of what's going on, we spent more time this time preparing J for what was going to happen. Keith took the day off work and we let J choose who took him to the hospital (Daddy), and made sure that he knew they'd have to leave early in the morning and he wouldn't get to have breakfast. He seemed to cope fine with all this, and I'm pleased we talked about it lots in the week leading up to the operation. I printed him a December calendar and marked on it all the things we do, as well as "Jarrah goes to hospital" on Wed 8th, and he still loves to point that out :-)

He's had general anaesthetics before so i was fairly sure there wouldn't be any side-effects, but expected him to be a bit sleepy afterwards. Fortunately he was 2nd on the list so his surgery was early in the day, and they were home about 11am! He seemed to bounce back from the GA really well, and even went to Kindy the next day (whereas i had expected him to not really be up to it).

Must confess i haven't really noticed a difference in his hearing function since having the right ear cleared out, but i'm trusting that it's made life easier for him...

Next appt: Thurs 9th Dec (tomorrow) - Mater Audiology for Jonica

Jonica - Aus Hearing follow-up

Tues 30th Nov - Today we returned to Australian Hearing for a follow-up appointment after Jonica received her hearing aids on Nov 15th. This is just to check how things are going, that she's accepting them well, that she's actually getting to wear them (trickier than you think with a newborn!), that she's not being disturbed by loud sounds, to answer any questions the parents might have, and to take impressions for new ear-moulds if necessary. At this age babies grow so fast that they don't normally get more than 2-4weeks out of a set of moulds, so it's a very regular procedure!

I was most curious today to see how MissJ's middle ears were performing. At the fitting appointment back on the 15th, neither eardrum was actually moving so she was quite blocked up. She has to return to the Mater to complete the ABR testing, so it's important that we get these middle ears clear. She did have an appointment on Thurs 2nd Dec but i stupidly cancelled it based on the results of the Nov 15th appointment, assuming that her ears wouldn't clear in time...it would have been smarter to have waited until today's appointment, but there you go.

All the preliminary checks and questions were fine, she's wearing her aids probably on average 2-4hrs per day - which doesn't sound like much, but when you consider that she's asleep for about 14-17hrs per day then it's really not too bad. We will be aiming to increase this as she's awake for longer periods of time, but i must confess there are also times when i simply forget...you wouldn't think so, but i do!!

Then, the much-anticipated (by me) tympanometry...drum roll please - her eardrums were both moving nicely!!

Bother, now i *really* wish i hadn't cancelled that Mater appointment!!

But, it's fantastic news that her ears are clear, cos it means she's hearing even better than we thought now that she has her hearing aids. I noticed a difference in her responses to sound the day after she received her ears...even more focussed on us when we spoke to her, she'd turn to me when i spoke if she wasn't already looking at me, if she was wiggling and i spoke or sang to her she'd stop and listen...so i was really thrilled to know that she was hearing better than i thought, and that we don't have to make another visit to our ENT...who is a really nice guy, we really do like him, but we'd rather not sponsor his next overseas holiday *entirely* by ourselves! :-)

The rest of the appointment was all routine stuff...check the hearing aid settings to make sure they're correct, take new impressions (did Kaelen's too, as his moulds are getting a bit small, and since we were there...), and make more appointments...

So, now to ring Mater back and see if we can get an ABR appointment before Christmas... *sigh*, really wish i'd kept the original one!

Next appt: Wed 8th Dec - grommet surgery for Jarrah