Wed 5th May - Dual Australian Hearing Checkup

For the second time, we've been able to co-ordinate Jarrah & Kaelen's Aus Hearing checkups so they happen on the same day, at roughly the same time! Saves me making two trips, although i know i'm spoiled, we have Aus Hearing very close to us.

These were standard 6-month checks for both boys, and while the results weren't earth-shattering, they were slightly inconvenient. Kaelen was first, and he's been quite sick during this last week - very high temperatures last week, lots of sinus movement, and a lingering cough. Before they actually do any testing they check the movement of the eardrum, just in case there's anything in the middle ear which might be affecting the child's hearing. Which there was. To be expected, i guess, but Kaelen's eardrums didn't move at all. Pest! That means (and could mean) several things:

1. Today's air-conduction tests were basically useless, returning about 20dB worse than usual, so they were aborted early

2. We had to make him suffer through bone-conduction tests, which are most uncomfortable for anybody, let alone little kids

3. We have to go back and repeat this test once his middle ears have (hopefully) cleared. This means usually 6-8weeks, but with the way things are at Aus Hearing at the moment, it's more like 12wks

4. If they're still blocked in 12wks time, we'll have to go re-visit our trusty ENT :-(

So the good news is that there doesn't appear to be any change to Kaelen's permanent hearing (as indicated by consistent bone-conduction results today), just a mild temporary loss on top of it. The bad news is several-fold:

1. We have to go back to Aus Hearing and do this all again

2. We may have to go to the ENT again

3. J&K's Aus Hearing appointments are now out of sync again. Perfectly. Exactly 3months apart. Rats.

Then it was Jarrah's turn. I learned long ago not to place bets on Jarrah's results, you never really can tell what's going to happen with him. I had a slight suspicion that his higher frequencies weren't performing as well as they could, based on some activities we do at speech, but wasn't going to make any predictions. Since our last check-up, J's right grommet has come out of his ear so it was also going to be interesting to see how his middle ear was holding up. He has also had a mild cold recently, but has been well for about a week. It turns out they could tell from the Tympanometry (checking the eardrum movement) that his middle ear was clear on the right side but his Eustachian tube (which joins middle ear to your throat, responsible for keep the middle ear aerated) was blocked. Also, to be expected, but something else to check again later to make sure it clears on its own. At least when we return with Kaelen in 3 months they'll be able to check J's Eustachian tube again, and if it's blocked? You guessed it - back to the ENT!!

Anyway, Jarrah did pretty well with his listening task, returned very similar results to last check-up (hooray!), only affected in ways that were expected by the Audio's because of the blocked Eustachian tube. Surprisingly to me, his high frequencies were within margin of error (+/-10dB) of last times results, so not enough change to warrant a major change to his hearing aids. That said, because he is now grommet-less on one side that ear now handles sound differently, so there were some adjustments to be made to account for that!

I love the parking sign in the Aus Hearing carpark - "Maximum 2 hours. Tow away zone." I had to laugh when we arrived, i figured there was no way we'd be out of there in 2hours, and i was right...i think it was actually 3hours from arrival to exit of carpark :-) My boys are so good, they played (mostly) well the whole time we were there, they're very co-operative with all the tests and prodding and poking that happens at these things, including taking new impressions of their ears to make new moulds (cos they've grown)...that green stuff is cold and gooey and must feel nasty going so far into your ear, but they handle it well.

For those who haven't caught up with our news, we are having another baby in October 2010, which is very exciting but also has me wondering if we'll end up with 3 sets of appointments, 3 little drying beakers on the dining room table, 3 FM systems once they're all at school...i know that nobody on earth can see the future, and we'll find out soon enough, but i just wonder. I did enter this pregnancy content to have another hearing-impaired child, so i won't be completely devastated if we do; in fact, i'm pretty much living with the expectation that this baby will be deaf to some degree. It's my little defence or coping mechanism in advance...that way if they are hearing impaired, i will be ready for it and it won't be a disappointment, I'll be able to celebrate their little life just for them being them. But, if they do happen to have normal hearing, it'll be more relief than celebration...so many fewer appointments!!

Whatever happens, God's got it figured out, He's not panicking - i just have to trust Him to guide us along the way, and remember that he has *my* best interests at heart too...

Next appt: Tues 3rd Aug, Kaelen's return Aus Hearing checkup

Let's get a little perspective here...

OK, so this post has nothing to do with our Journey Into Silence...well, nearly. Just stay with me.

We've had a very interesting few weeks In our house. I thought I was done with having children. Two hearing-impaired boys, that should be enough to keep me busy, isn't it about time i started to get my life back and do some grown-up things again? Surely more children would just be too much hard work with two special-needs kids already - what if we had another hearing-impaired child? *Three* speech sessions a week? Trying to get Aus Hearing appointments for 3 children sounds to me like an insane proposition. What if we had a hearing child? Would they get the attention and opportunities they needed, or would they miss out because they could cope fine and their brothers could not?

Well, since mid to late November, we suspected that we were unexpectedly pregnant, which was confirmed by a positive, although weak, test in early December. Something didn't feel right though, & I just couldn't settle with the pregnancy. I had some off days but then other days when you could very easily convince me that it was all a dream.

Well, that dream was rudely interrupted on Tues 15th Dec, when I began bleeding. Lightly at first, but then more heavily & painfully, which made it necessary for me to have scans to see if I was miscarrying or not. Straight after scans I went to see my obstetrician to determine the outcome & a course of action if required.

The sonographer was lovely, & said she thought she could see a small cystic-looking object, but it certainly wasn't the right size for the 6.5 weeks I thought I was...but then I went to see my Dr, & he just blew me away when he said, "The uterus is empty; there's no pregnancy there."

Empty. A yawning abyss of - nothing...

So, what was going on? Hard to pinpoint, it would seem, but apparently two options. Either I'd micarried & the pregnancy was already gone, or I had an ectopic pregnancy. Eeek, don't like the sound of that...how do we tell? I needed two blood tests (which, I must add, I hate beyond all reason), 48 hours apart, to measure the actual quantities of human growth hormone in my body. In a normal pregnancy, the level should double in that time. In the case of a miscarriage, the level will drop. If the level is stable, however, this would indicate an ectopic pregnancy. So I'm a good little girl & go off and have my bloodtests...and actually get through both of them without passing out, not even once!

And then we wait...

Have you ever felt like a walking time-bomb? Don't, if you can manage it. Not pleasant. Wondering each day, each hour, each minute if you'll get to the next day, next hour, next minute intact is a very taxing, draining way to live. We did, however, make it through a busy 6 days to our next appointment (by making as complete Christmas preparations as possible just in case i required surgery 3 days before Christmas!), and the verdict was clear: miscarriage.

How do you grieve the loss of something you didn't expect to have?

When something arrives unexpectedly like this, you come to terms with your new reality and make adjustments accordingly; you sort of, re-align your compass to a new bearing. You imagine your car with another baby seat, your house with another bed, your "baby" (18 months old!!) moving out of the high-chair because he *has* to, more boxes of newborn nappies, equipment to be re-gathered from borrowers, night feeds and expressing milk, washing bottles & bibs...you see other newborns with their mums and think, "In 8 months, that'll be me! Eeek..." But then, to have your compass suddenly re-adjusted back to its old bearing - now that's another thing altogether. Logic would say that things can just be the same as they were before, it can be like it never happened...

...but it did happen.

There was a life, there was a baby, i have memories and feelings, notes in my mental diary that are very hard to erase...not to mention 3 pee'd-on sticks with little faint lines and dates on my bedside table that i see every morning and every night :-) There's another child in heaven now, whose name i don't yet know but who i will hold one day, and celebrate the life that...never really got a chance.

All this has helped me to focus my thoughts and desires about having more children. I was never really been very committal about (a) having children int he first place and (b) how many i'd like (just ask my husband!). Having a desire, a want, seemed too selfish to my well-trained Christian mind...defer to others, die to self, put yourself last...all of which are true and good but, when not learned and applied well, can result in the place i find myself today - not being able to identify what I really want for my own life, sort of living by default...which really turns those phrases into a bit of a cop out. A dear friend of mine & her husband have always wanted 4 children; now I rather envy them, because they have a plan and can work towards it (3 down, last one on the way!), while I've felt a bit like i'm floating in space, making it up as i go along, hoping it's not too late. But this experience has helped me to really think about that, and come a few steps closer to forming a plan. Losing this baby has made me realise that although he/she was unplanned, perhaps I actually wanted him/her, and losing something unexpected can be painful too.

And do you know what? Not once since the end began did I even consider whether or not the baby might be hearing impaired. I had thought about it since the first positive test and made plans to accommodate the possibility, but in the face of the complete loss of the child, that was simply not important; this was a precious life, deaf or not. And I think i've come to a place where hearing impairment is not something to be feared, as it can not be deliberately avoided. I wonder if more children might be actually what i need, to move me out of my comfort zone, to grow *me*, and to extend *me*...maybe that's what God intended through all this anyway?

So it is with this new-found perspective that I enter 2010, and see what adventures lie there-in...

Aus Hearing check-ups Nov 2009

Well, it seems miracles do happen...i know that to be true, but i wondered if they'd ever occur in Government departments! What, you may ask, is this wondrous moment, this glorious event?

We managed to get two (read: 2!) Australian Hearing appointments, one each for Jarrah & Kaelen, on the same day!

And not just the same day, but even adjacent times! How perfectly suitable...

And, the miracles didn't cease there!

These were standard 6-monthly check-ups, so it was the usual round of testing to check hearing levels & canal volumes and tympanometry and all those exciting things. Kaelen's results were stable as usual, which is great - no changes there. He wasn't too interested in the puppets this time, so we resorted to party lights to encourage him to respond - worked beautifully! :-)

I approach Jarrah's check-ups with a very open mind these days, content in the knowledge that i have no idea what results he's going to return. Took me a while, but i have learned not to predict the outcome - one disappointment too many makes it not worthwhile anymore. Because he's now over 3, he can have his check-up with just one audiologist (instead of 2), and, being the independent and trusting little bloke that he is, happily toddled off with the audiologist without me so that i could stay with Kaelen to complete his appointment!

We joined Jarrah quite some time later, and herein lies the next miracle - his results were basically the same as his June check-up, which were the best results to-date!

Two consecutive tests with the same results! For Jarrah, that's a miracle!!

Perhaps this is the beginning of his hearing levels settling down; perhaps it's just a lull; perhaps it's a sign of his middle ear troubles disappearing - who knows, all i really care is that they didn't have to make his hearing aids any louder!

So, back again in 6 months time...it's quietened down quite a lot lately; not so many ENT appt's now that the grommets are working, and staying in and clear; no extra appt's for Kaelen cos he has stable levels and no middle ear issues. Something close to normal life!

Next appt: Wed 5th May Aus Hearing check-ups (yes both, and consecutive - again! But then, at 6 months out that much easier to do...)

Appreciate the little things...

It's raining at my house. Jarrah had recently got up from having a nap, and i'd been cooking dinner, so i hadn't yet put his hearing aids in. I pointed out to him that it was raining, so he rushed over to the door to look at the rain. Lately, he's been saying to me, "Can you hear the plane?" when there's been a plane flying overhead, which made me realise that he probably couldn't hear the rain without his ears in...

*Sigh*, get the goop, put them in...then i could ask him, "Can you hear the rain?" "Yes," he said, "hear the rain!"

Praise God for technology that can help my deaf son hear the pitter-patter of rain on the roof...

BTW, we cancelled all our September appointments as Jarrah was quite unwell - turned out he contracted Roseola, otherwise known as Baby Measles, so he had his latest Study assessment just last week, and his regular Australian Hearing checkup was rescheduled for...November 18. Yes, 8-9 weeks wait. Nevermind, at least J&K are on the same day this time!

Am I allowed to sing the praises of early intervention? Too bad, cos i'm about to...

I cannot begin to describe what I'm feeling right now. Is this what parents with hearing children experience? I don't know, but elation is probably a word that comes close.

Kaelen is currently in his room "reading" books. I just went to have a look at what he was reading, and he turned a page, pointed to a picture of a duck and said, "duck!"

(Imagine mouth hanging open, synapses dizzy with joy)

At 13 months old!

Maybe that's normal, but when J was 13 months old, all he could say was "aahhhh", and in hindsight he was completely deaf at this point. Kaelen is now saying/signing "please" when he wants something, has jsut told me there's a duck in his book, and the other night was trying to copy "ssssss" for the sound a snake makes (comes out "pfff", but not a bad try!). For a hearing impaired child, i think that's pretty darn good.

Why the difference?

Early intervention.

Jarrah's age when hearing aids first fitted: 18 months, following 4-6 months of total deafness due to fluid in the middle ear. Kaelen's age when hearing aids first fitted: 3 months, with constant monitoring and fortunately no fluid. My thoughts: the earlier you can get hearing aids into a hearing impaired child, and monitor their middle ear pathology, the better!

Anyway, nothing to do with appointments or anything, but jsut a quick note of joy that Kaelen's speech & language seems to be developing quite well thankyou very much!!

Next appt: J's Aus Hearing checkup, Wed 9th Sept

False Alarm...

OK, so we don' have to go back to the Mater Cochlear Implant Team after all...

Since my phone call and emailed copy of J's latest test results last week weren't quite enough, i received a phone message from the Mater Implant Team on Monday, saying they'd received J's results from our Aus Hearing audiologist, and maybe we didn't need to come in after all...

Nope, i'm just a Mum - i know nothing.

I returned the call and talked to the audiologist who would have seen Jarrah...who was also of the opinion that these latest results show that Jarrah is nowhere close to being an implant candidate, and that it probably really wasn't necessary for us to attend the appointment. Hooray! Someone sees sense at last! I didn't know our audiologist was going to email the Team, but i'm sure glad they did!

Ohwell, that makes next week slightly quieter...lots of family gatherings over the weekend & Monday PM (including visitors from overseas - USA as well as Tasmania! =D ), then ENT checkup for both boys on Kaelen's birthday, Wed 1st :-)

Another unexpected letter...

Hehe, just when you think things are going to settle down for a while...

If you've read the previous post to this, you'll know that Jarrah returned an amazing audiogram at last week's Australian Hearing checkup. I must confess that i thought that things would begin to settle a bit now, that we could relax a little, and that we'd just continue on our current course.

The Mater sure know how to mess with yr head! :-) On Monday we received a letter from the Mater Cochlear Implant Team, requesting that we attend an appointment on Monday 29th June at 9am.

What?!?

I thought we were out of the Implant land now! Anyway, I emailed our Australian Hearing audiologist who suggested i call the Mater to see if we really needed to attend the appointment. I rang them, and impressed upon them the fact that we'd just had an Aus Hearing checkup and that J returned excellent results, but no, they do *different* tests, and this is really a follow-on from our initial consultation (which was last year!), and yes we really must attend...oh, and could they have a copy of his latest audiogram please.

Well, hopefully this will be the last time we will have to attend the Mater Cochlear Implant clinic...