And so it begins...

Nothing earth-shattering, but just the beginning of the process for Kaelen, making it slightly more real...we were at speech today and of course people were asking how we went with Kaelen's hearing test last Friday, so of course i told them, and we were encouraged to begin the process of enrolling him in the speech centre too. The centre has to make an application to the Dept of Education for funding for a place for Kaelen, but based on his test results they think this won't be a problem, so i signed the permission form today for the centre to make the application. *Sigh*, one step at a time, and each step reminds me that it's real, it's not just a game we've been playing, "let's test the baby's ears", it's serious and needs to be addressed.

Although funding for his place will take a couple of weeks to be approved, Jarrah's teacher is more than happy to begin working with him immediately...which is great, but we'll have to work on the whole staying-awake thing :-) Kaelen tends to have a feed half-way through Jarrah's lesson, and is often extremely sleepy after that feed, doesn't always have any awake-time at all just yet, but hopefully as he gets bigger he will stay awake. Although, i should just apply the universal law of the quickest way to wake a sleeping baby - put them down! :-) Works every time...

And it seems that the boys will both qualify for Health Care cards due to their losses, and i may qualify for a Carers Allowance...not too worried about the allowance, but the card for the boys will be useful...better block out another hour to spend on the phone to Centrelink trying to figure it all out...

I had the dubious honour of making a double-ENT appointment the other day - a follow-up for Jarrah after his grommets, and an initial appointment for Kaelen following the results of his tests. I'm sure our ENT will be thrilled to see all of us...although a kind friend has suggested accompanying us into town with her kids and perhaps having a picnic together afterwards, which sounds like a jolly good idea to me. It'll be nice to do something pleasant in town while we're there, and it'll be very nice to have some company, both for me and the kidlets...you can never quite tell what these ENT appt's are going to turn up, so it'll be nice to have someone to talk to afterwards...

ENT appt's: Tues 9th September 10:15am

Kaelen - confirmation hearing test - now with full results

Fri 22nd Aug was Kaelen's confirmation hearing test. He got 2 Refer results in his newborn hearing screens, so we had his first ABR (Auditory Brainstem Response) in mid-July and this second ABR was to confirm that the results we got were accurate. And it seems they were. Pity, that.

Kaelen has a bilateral hearing loss, which is just a fancy way of saying he has loss in both ears. I've misplaced my copy of the report from his first test and i haven't received a copy of the report from this latest test yet so i'm working a bit from memory here, but from what i can recall his right ear responds to sound at approx. 50-60db, which is a moderate to moderately-severe loss, and his left ear responds at the moment to sound at about 80db, which is a moderately-severe to profound loss. There appears to be some conductive (middle ear) component on the left side which complicates things somewhat, but the right side appears to be only a sensorineural loss (no middle ear component).

The testing on Friday was comprehensive, the audiologist said she got all the tests done that she had planned so we have a pretty good picture of what's going on now. I'll come back and check/complete this detail once i get this latest report, but here's what i remember of the results, and a bit of an explanation of what it all means...

Tests completed on Kaelen included air conduction both sides, bone conduction both sides, frequency-specific air conduction both sides at 1kHz, 2kHz & 4kHz, tympanometry & TEOA emissions testing. Took about 3hrs and he had to be asleep for all of it - lucky he's a sleepy kid!

Air conduction - tests performed by placing a headphone over the ear and delivering sound signals through the complete ear mechanism (outer, middle & inner ear). Can be done using a clicking sound, which covers most hearing frequencies, or using specific frequencies for more accurate mapping of a person's loss.

Bone conduction - tests performed by placing a transmitter on the skull just behind the ear and delivering sound directly to the inner ear, thus bypassing the outer and middle ears and giving a better indication of what the cochlea & nerve can do. For more info on how our ears and brains are connected (it's really interesting if you're into that sort of thing), see this wikipedia article.

Tympanometry - tests giving the volume of the outer ear canal, indicating whether or not the eardrum is intact, and showing whether or not the eardrum is able to move.

TEOAE's (Transient Evoked Otoacoustic Emissions) - testing of the movement of the hairs within the ear. In a person with normal hearing these emissions are present; if these emissions are absent, that indicates abnormal hearing.

Results: (all have a margin of error of +/-10db; Pass = 20db)

Air conduction Right:

Click = 50db

500Hz = 60db

1kHz = 60db

2kHz = 50db

4kHz = 60db

Air conduction Left:

Click =  80db

1kHz = 70db

2kHz =80db

4kHz =90db

Bone conduction Right: 40db

Bone conduction Left: 55db

Tympanometry: showed eardrum movement on both sides, but is known to not always be accurate in babies this small

TEOA emissions: absent

So, what does all this mean? It would appear that Kaelen's loss is stable (unlike Jarrah's which fluctuated significantly in this newborn period, and apparently continues to do so), so that means we can begin the intervention process right away. Mater Audiology will refer us to Australian Hearing for Kaelen to be fitted with hearing aids in the near future, we will need to go to our ENT to see what's going on in the left middle ear and fix it if at all possible, and he will begin the intervention programme along with Jarrah next week. It's kind of a lot to process at once yet at the same time it's all familiar, so i'm not sure that it's really hit me yet...i think it will become real the day i see my little baby wearing hearing aids. That could be a tough day.

In the meantime, here we go again...

Jarrah - grommets & adenoids

Well, as of yesterday, Wed Aug 20th, Jarrah is sporting a new set of grommets and is now adenoid-less. His right grommet had come out and the ear had blocked up again, and our ENT had advised replacing both grommets and removing his adenoids while they had him, so yesterday was the day.

Keith took Jarrah in for the operation this time, and i went to MOPS with Kaelen - not because i didn't want to go with Jarrah, but because we felt it might be tricky with both kidlets, especially as Jarrah tends to be sleepy/groggy/teary after a general anaesthetic, and i didn't relish the idea of juggling 2 small people if Kaelen happened to be unsettled at the time. So this was an experience for Daddy too, cos up til now I've always been the one with Jarrah for any of these procedures. Keith has come to some but never been able to stay and go through the whole event, so it was interesting for him i think to see how it all goes, and interesting for me to see how Keith handles it. Not that it's earth-shattering, or that i'm looking for one of us to be better or worse, but i was just curious about what Keith's reactions might be.

And i think a few things caught him unawares...which is ok, just i think he was a bit surprised at his own reaction. We are allowed to travel with Jarrah into theatre and be with him as he goes to sleep, and then we wait back in the day ward. Keith said he found himself a little choked up, a little teary as J was going under, not something he had expected. They prayed quickly before J was given the gas, partly as a signal to J that he was going to sleep now, but i think also to give Daddy some strength too, to help him know that it'll be ok.

Anyway, all seems to have gone well. ENT put a larger grommet in the right side this time, hopefully to keep it open, and apparently J's adenoids were large - not sure if that means inflamed, but there was perhaps more of them there than there should have been, so it's probably a good thing that they're gone. The unfortunate short-term consequence is that there's some dried blood around, which makes J's nose a bit itchy...it'll pass.

On the hearing front, there was again an immediate difference, as with the first set. J's almost-favourite toy at the moment is a Leap Frog baby Leap Pad, with books and cartridges that you insert and interact with the books by pressing the pictures. Prior to today, he couldn't hear the sounds at all without his hearing aids, even with the volume up full. Trying to do so was tantrum-inducing material, as i think he thought it wasn't working or something. When everyone got home at about 2pm, that was the first thing he went for, and i thought, "Uh-oh, here we go, can we put his aids in?" We let him try, and at default volume it was a bit tricky, but once we turned the volume up full he was fine! Amazing! He could hear it enough to play with it happily without hearing aids! That shows that the new set of grommets and removal of the muck that was in his ear has made a significant, measurable difference - and that's enough for me!

Jarrah - Aus Hearing checkup Fri July 18th

What a busy week! I guess it's welcome to the world of having 2 boys with hearing losses - appointments, appointments & more appointments! Because Jarrah's hearing levels appear to fluctuate, Australian Hearing monitor him every 3 months (instead of every 6 months) just to make sure his hearing aids are set correctly etc., and to keep a finger on what exactly his ears are doing...well, probably more like approximately than exactly!

So the day after Kaelen's hearing test, we have an Aus Hearing checkup for Jarrah. This involves a VROA (puppet test) & the usual volume & tympanometry tests (are the grommets open, and is the ear drum moving?). The audiologist still couldn't see the right grommet, which was the one giving us trouble last time back in April, but there was some movement of the eardrum, although not much so they suspected there may be some fluid building up there again. They managed to complete testing for the left ear before Jarrah got bored with the whole game and his levels in the higher frequencies were pretty much the same as previous tests, but in the lower frequencies they appeared to have deteriorated into the profound range...which was really not the news i wanted to hear, and just so didn't line up with what he appears to hear (granted, with hearing aids) and what he can do in terms of speech. They were very concerned about that and therefore really wanted to test the right ear urgently, so we had make yet another appointment! Fortunately someone had just cancelled a booking for the following Tuesday, so we grabbed that one.

Our speech teacher was astounded when i told her about the results the following Monday. She found it amazing that Jarrah is doing what he's doing speech-wise and making the progress that he's making with such a severe loss. He's a mystery...

Tuesday 22nd July, we re-present at Australian Hearing. First, volume & tympanometry tests, and guess what...that's right, they've changed - in 4 days!! The volume was similar, but now there was NO movement of the eardrum, a clear indication of fluid building up again. The poor audiologists didn't quite know what to make of this, they were astonished at the change in 4 days...welcome to my world. This was no surprise to me, as throughout Jarrah's life i've seen his hearing change from day to day, even within a day - deaf as a post in the morning, sharp as a tack in the afternoon. I mean, i think they knew there was fluctuation, but the rate and amount of change took them quite by surprise. Anyway, the bottom line of that was that they could test the right side but wouldn't get accurate results because of interference from the middle ear, and we needed to go back to our ENT to sort it all out. I can't remember what the levels of the right ear were like, because the results weren't really valid anyway...

Tuesday 29th July - ENT visit. Of course our ENT is always happy to see us :-s He remarked last time that Jarrah has just about the thickest file of all his patients...i don't see that record being taken from him too soon. We discussed Jarrah's progress and middle ear situation, and, after a visual examination, ENT decided that the right grommet was definitely gone - in his words, "there's no way it can be still in there". This was the situation we thought we might face after our last visit, so there wasn't much to discuss in terms of where to from here - more grommets & removal of adenoids (http://en.wikipedia.org/wiki/Adenoids). Simple.

What wasn't so simple was the suggestion again that perhaps we should have a preliminary visit with a cochlear implant specialist...not because Jarrah's in dire need, although his audiograms are pointing in that direction, but more because ENT acknowledged that he's not an implant specialist, and would rather we see someone sooner and get an expert opinion than wait a few years and then have them say "you should have been here years ago!". So although it's a difficult conversation to have, i appreciated that he respected us enough to advise us to get that expert opinion. He therefore asked if he could pass our details on and get them to contact us...and hard as it was, i had no reason to say no. This doesn't mean that Jarrah's definitely getting implants, and even if he'd benefit from them it's up to us in the end to decide whether or not to go ahead.

So, upcoming appointments:

Wed 20th August: insertion of grommets & removal of adenoids for Jarrah

Fri 22nd August: next ABR hearing test for Kaelen

What a week...

Here we go again...

The night after Kaelen's first hearing screen, they repeated it as is standard practice. His result was Refer this time too, which by then didn't surprise me at all, but was still disappointing. This meant more in-depth testing at Mater Audiology, sometime in the following 2 weeks. That was a bit different for us - because Jarrah was born at the Mater hospital we were able to go straight to Audiology the same day as his 2nd screen. Kaelen was not born at the Mater, so had to be referred by the hospital and then Mater were to contact us to arrange an appointment. Consequently, this time we left hospital knowing there was probably a problem but with no idea of the scale, and waiting on the phone to have a chance to find out.

This is the one thing i don't like about the Healthy Hearing programme. It's great that children who need help get picked up really early so that they can get the help they need, etc. etc., but it really puts a downer on having a new baby. You barely get a few days to enjoy them before you get this news, and it really rains on your parade. I know, they've got to do the screening while the babies are still in hospital, cos if they don't do it then it's unlikely to actually get done...but if there was any other way, if there was any option which allowed new mums to enjoy their little ones for just a little longer before getting this news, i'd vote for that. Now, i know that the vast majority of the population don't actually get bad news, so for most people it wouldn't really matter...but it's a burden on parents who do get bad news, no sooner do you have this new life than you've got something to worry about. Great, thanks. Of course, this is not the programme's fault, and truth be told, without Healthy Hearing Jarrah would probably still not be saying anything except "ah", and we'd be wondering why we had such a stubborn, willful, rude child who didn't listen to a single thing we said...but i just wish there was some way i could have enjoyed my babies for a little longer before sadness entered their lives. I guess it was grace that i was given 2 days with Kaelen, where i only had 1 day with Jarrah...

Our Mater Audiology appointment was set up for Thurs 17th July. Fortunately Kaelen is a sleep-anywhere baby, so he settled really well for the test (they need to be asleep for the testing), and even after he woke for a feed in the middle of it, settled again immediately. Unfortunately, the results did not look good as they started coming in. As this was initial testing they were just using a generic 'click' sound, not specific frequencies, but that gives enough information for a start. His right ear returned 60db (about the level of normal conversation) and his left ear returned 80db (significantly louder than normal conversation), although they were fairly sure there was a conductive component to the left ear, so potentially some fluid in the middle ear or something like that. They also did some bone conduction tests, which bypass the middle ear altogether (and therefore any fluid that may be hindering transmission of sound through there) and test what the inner ear (the cochlear & nerves) is actually able to do. The right ear levels were within the margin of error of the standard air conduction tests they did at first, but the left ear levels were significantly better than the air conduction tests, further hinting at a conductive component to the loss.

Audiologists never seem to like to give a final result too quickly. They always want to give the babies more time to grow and drain, or another chance - which is wonderful, but it can string the process out a bit. It seems fairly clear to me from these test results that we're dealing with a loss not unlike Jarrah's, but they want to test again in 4-6wks to confirm these results. I guess we're not losing too much time by waiting another 4wks or so, but this time i won't be letting it string out as long as Jarrah...nor, i think, will they.

Welcome Kaelen Marc!

Welcome to Kaelen Marc Harbottle, born on Tues 1st of July at 11:22am after just 3 hours of labour (that's if you don't count all the contractions in the preceding 3 weeks!), weighing in at 3.315kgs (7 pounds 5 ounces in the old money) and measuring 49cm (sorry, no inches conversion) - our "compact model".

Kaelen was induced a week before his actual due date, mostly because Jarrah had been an average weight baby but had got his shoulders a bit stuck on the way out. This is usually seen in larger babies (4kgs+) so it was decided that, in an attempt to avoid any trouble this time, we should bring this baby on a little early. Things were beginning to move anyway (due to all those lovely contractions!) so my Dr felt it wouldn't be a problem. It was kind of weird, having an appointment to have a baby. Jarrah had begun the process on his own (with my waters breaking) but i needed help in getting regular contractions going, so we really had no idea when he was going to arrive until it all began ("Well, looks like i'm having a baby today!"). This was obviously quite different, and it just felt odd having it in the diary. As a friend of mine said, "9am - hairdresser, 10am - shopping, 11am - Have baby!" very weird.

Anyway, things went nearly according to plan. The labour and birth themselves were trouble-free, which was a blessing, but everything happened so fast that sadly my parents missed the actual birth. We had made arrangements for them to arrive at what we thought would be a reasonable time, and worked in with their schedule for the morning, but unfortunately nobody told Kaelen about their schedule, much less that he had to wait for it! Despite a text message sent by Keith at 5 to 11 saying "COME NOW OR TOO LATE", they were just that - too late. Nevermind, they did arrive (with brother Jarrah in tow) about 30mins after the birth, and we had a lovely time introducing them to their 2nd grandson. I think my Dad is quite enjoying having grandsons - i have only one sister so he never got to raise boys, and i think he's quite enjoying having at least one little boy who just thinks he's the best!

During those first couple of days, we were watching Kaelen like hawks for every sign that he could hear normally. I could have sworn that he woke to my phone alarm once, and re-settled once i turned it off. We were really hopeful that this time we'd have a hearing child, the chance to raise a "normal" child and know what it's like to have a child who can hear you and develops speech "normally", without having to be taught how to listen. For us at the moment, the only normal we know is hearing impairment, although of course when i spend time with friends who have hearing children of the same age as Jarrah, i can see the difference. Sometimes i am envious of them, that they can call their 2-yr-old from the other end of the house and the child responds, that they can say, "Go and get your croc shoes from your wardrobe" and the child goes and returns with the correct shoes. For us, it was an achievement when, only about 6 weeks ago, Jarrah understood the word shoes, let alone where they were or what type of shoes they were. We're still working on the difference between his big black shoes (sneakers) and his slippers. "Language is a miracle", yes that's true, so where's my miracle? I must have missed something on that one...

Kaelen's hearing was tested on the Thursday after his birth. I hadn't seen how they did the hearing screen for Jarrah, so i was glad in some ways that they brought a mobile unit to my room. I'm a curious soul, so i like to see how things are done :-) The nurses were all aware of Jarrah's condition, so they were taking special interest in Kaelen's results, hoping like us for a Pass.

The test took a lot longer than i expected, although the results are available as soon as the test is done. Unfortunately, Kaelen's results was also a Refer, in both ears. Of course, this doesn't mean there's definitely a problem but, given the family history, it wasn't a good sign. He wasn't particularly well settled for the test either, but this kind of test is more a yes/no test than a detailed how-much test.

I was so, so disappointed. I hardly even know what to write next to capture what i felt after that test. I think the biggest thought in my mind at that point was "Why?" Why do other families get 2, 3, 4, 5, 6 healthy kids and i get 2 deaf ones? Wasn't 1 enough? I did ask for a hearing child, God, why is the answer no? Didn't you hear me? Why taunt a musician with deaf children, as if to mock the very gift I was given? This is simply not fair.

And then what about him? Hard as it is to parent a deaf child, what about the difficulties he will face throughout his life? Why give him this burden, such a tiny package with now a huge obstacle to overcome? What is God's purpose for him in all this? Will Kaelen too have to endure being looked at, poked and prodded, scanned, sedated and operated on? So much for such a small person.

Then i have to remember that it's not the end of the world. The screen is not conclusive, there is time for things to improve if it's just congestion, and even if the worst result comes, we've been here before. We have a network of friends and family to help and support us, we have a team of professionals around us to advise and direct us - we can do this. I just really wish we didn't have to.

The journey thus far... - part 8 - nearly there!

It's amazing the things you learn as a parent of a hearing-impaired child...lucky i like to know stuff, otherwise i think i would have got jack of this long ago. Hopefully you've learned a few things from reading this blog too - well, i'm about to subject you to more!

There are these things called Ling sounds. They are a set of 7 sounds that make up the building blocks of all speech. They cover all the frequencies at which English speech sounds are made, things like 's', 'sh', 'm', 'ee', 'or', 'oo' & 'ah'. They were categorised by a guy named David Ling...hence the name, Ling sounds. Cool, huh?

Every week at speech, Jarrah is tested with the Ling sounds, to see if and how well he's detecting each sound, and potentially copying it, making the sound himself. During and for a while after his "episode" he had not been detecting them too well, getting the easy ones, but not even detecting some that, according to his audiograms which i don't believe, were outside his range of hearing. One morning in late May, before testing the Ling sounds at speech, his teacher began to make her cochlear implant noises. She had previously said that he was obviously getting good access to sound with just his hearing aid at this stage, and that we shouldn't need to think about implant until perhaps he gets to school, if the noisy learning environment is too challenging. Because of his sudden lack of progress during the episode, she was now wondering if we shouldn't take him and at least get him assessed to see if he's really a candidate, and think about doing something sooner rather than later.

Well, she picked the wrong time to say that! That morning, Jarrah detected and copied every Ling sound, even ones he had previously not got at all, even the dreaded 'ee' sound!! It just seemed like he had switched on all of a sudden...as if all the set-back he had suffered during the episode suddenly didn't matter, there was progress to be made. What a relief, in some ways, yet at the same time deepening the mystery that is our son and his hearing...

In June, Jarrah turned 2 years old. So much has happened in those 2 years...yes, all the normal developmental stuff, but the journey through hearing loss over these 2 years has been...well...lots of things. Sometimes it's been easy, other times hard, it's been fun and not-fun, educational, depressing, enriching, frustrating, exciting, confusing, surprising, baffling...often all in one day :-) It's made me really question the goodness of God, but it's also brought me closer to a point of accepting that everything happens for a purpose, and that He will bring good out of what is otherwise a bad situation. I can see now that Jarrah will function just fine in a speaking world, even though these early years are going to be a lot of work. Because his hearing appears to fluctuate on a daily basis, i've had to learn (and am still learning) to "read" him each day to assess how much to expect of him, and how strict i can realistically be with him that day. 

Our 2nd baby is due on July 7th, and a few months ago i really wondered how on earth i was going to manage a newborn with a hearing impaired child. Jarrah was so unresponsive and understood so little of what i said to him that i really was very apprehensive about what the immediate future held. Thankfully, as my due date has approached, Jarrah has come ahead in leaps and bounds, to the point where by our last speech lesson for Term 2 in late June i thought, "OK, i think i can manage this!" He actually turns to me when i call his name, he usually comes when i call him, and, using a combination of speech and sign, i can make myself understood a large percentage of the time. Jarrah's own vocabulary, both spoken & signed, is increasing almost daily, which of course makes it much easier for me to know what he needs...and wants :-)

July is going to be busy - baby due around the 7th, then our next Australian Hearing check-up on the 18th, plus a bunch of other things going on. After the Aus Hearing appt we'll need to go back to our ENT to check on the grommets and see if anything needs doing in that department...ho-hum... 

The one thing I would really like is for this next baby to be a hearing child. While i won't be devastated if they do have a hearing loss, i would like not to have to do all this again. Admittedly, we now have a great team of professionals around us, from ENT's to chiro's to audiologists...but it would be nice, almost novel, to have a child to whom i can speak normally, who jumps at loud things, and with whom i can sign for fun, not for survival... Please, Lord, can i have a hearing child?