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

Osteopathy for Jonica - here's a new one!

Fri 19th Nov - Today Jonica had her first Osteopathy appointment. Osteopathy involves treatment of the musculoskeletal system (bones, muscles & joints) to optimize body function. I've been seeing an Osteo for years to treat/manage back & neck pain (a vocational hazard), and i like to have my kids checked after they're born since being born is a bit unkind to one's back and neck. By the time Jarrah was about 6wks old we noticed he was quite crescent-shaped, so i took him along to my Osteo...and she straightened him out! :-) Kaelen was a little bent but not much; had him checked anyway and he's been fine.

Jonica was quite obviously crescent-shaped by about 3wks old. I had of course planned to have her checked but hadn't got it yet; this observation pushed me along a bit. I like to have a check-over myself, too, after giving birth - being pregnant does weird things to your body and sometimes I need a bit of help getting back to the right shape again, along with the new stresses of carrying a baby on the outside, and the effects of breastfeeding. MissJ had also been a bit unsettled at times and i had wondered if she might be in some discomfort.

So we went to see my trusty Osteo...who had been off work herself for about 3-4 months with a badly broken leg! It was nice to see her again, and nice to be able to introduce our new addition to her. She treated MissJ first, and my mother and I sat there and watched her straighten out...it was quite amazing! The change was very noticeable during the treatment! Apparently MissJ was quite tight and restricted on her left side; Osteo was able to achieve some good changes but wants to see her again in a few weeks.

Although MissJ was quite unsettled after the treatment (due to tiredness & hunger, the treatment of babies is *very* gentle), I'm pleased we went. She slept well the rest of the day and the next day, so perhaps it's really helping?

And an amazing thing is happening...we have a week next week without an appointment! Oh, except that MissJ needs her 2month immunizations...

Next appt: Tues 30th Nov - Jonica, Aus Hearing follow-up

Two appointments in one day - such a busy baby!

Mon 15th Nov - Paediatrician's 6wk check & Aus Hearing fitting appointment

Well, today's the day i've been waiting

for, the day my little girl becomes "complete", so to speak...the day she begins to hear the world as you and i hear it, and i'm excited! Might seem an odd thing to be excited about, but i've really felt like we've been in a holding pattern until now, knowing that she's not really been able to fully participate in her world because part of it's missing, and i've just been looking forward to her having full access to *all* her senses so that we can connect more fully with her, and she with us. I feel like we're in the "Ready, set..." stage, and that today is "...Go!!"

The little moulds that were made 2wks ago were ready and not yet too small, so the hearing aids were setup, fitted and tested...and didn't seem to bother her too much at all! :-) My Dad came to the appointment with us and took her first photo...

So, here we go...the world is now our oyster, let's see where she ends up!

Next appt: Fri 19th Nov - osteo check-up

ENT - Jonica & Jarrah

Fri 12th Nov - ENT for Jonica & Jarrah

Although this appointment was initially for Jonica, Jarrah actually took most of the time :-) ENT looked in Jonica's ears, was satisfied that she was fine to receive hearing aids & wrote a letter to that effect. Easy, done.

Jarrah, however, is always a puzzle :-) We really don't know why his ears keep blocking up, but the reason is really less important than the solution. In consultation with our ENT, we've decided to have J's grommets replaced - a new grommet placed in the right ear and the left grommet renewed - with the aim of giving him the best possible access to sound as soon as possible. He just seems to be susceptible to upper respiratory problems, so we have to do our best to keep him as well as possible. New grommets will go in on Wed 8th December, just in time for summer...

Given that we were all in the city for this appointment, that Daddy works in the city these days, and that our ENT was running distinctly late, we decided to visit Daddy and have lunch together. Daddy works near the Botanic Gardens so we went and got sushi, found a nice park bench to eat on, then the boys had a play on a playground. It was nice to have an impromptu picnic lunch together, then it was nice to get everybody home and have a good sleep :-)

Next appt: Mon 15th Nov - Jonica's 6wk check-up with Paediatrician, & hearing aid fitting @ Aus Hearing

Aus Hearing check-up - Jarrah

Wed 10th Nov - Jarrah's Aus Hearing check-up

I was pretty unwell on this day, so my parents kindly stepped in to take Jarrah to this appointment. Apparently he did well, he's now old enough to do Play Audiometry testing, which is where he performs some action when he hears a sound - in this case, drop a marble into a marble race.

J still has a grommet in his left ear, and the results on that side were consistent with previous testing. The grommet came out of his right ear about 12 months ago and there was some concern back in August that his middle ear might be blocking up again. We saw our ENT in August who suggested that if his right ear was still blocked at this November test, we should return.

*Sigh*, time to call the ENT again.

Turns out J's right ear is still blocked, his eardrum isn't moving at all which indicates fluid build-up behind the eardrum, which translates into a conductive loss compounding the underlying loss. This means that even with his hearing aid he's still not hearing at optimal levels.

Fortunately, our next appointment on the calendar is...with our ENT! Jonica needs to get medical clearance from an ENT to receive her hearing aids, so as soon as Jarrah got home i rang the ENT and was able to get Jarrah in with her appointment. Let's see what happens...

Next appt: Fri 12th Nov - ENT for Jonica (& now Jarrah!)

Jonica - initial Aus Hearing appt

Fri 29th Oct - after an interesting week including antibiotics (for the threatening middle ear condition uncovered last week) and 2 brothers away on a holiday with Nana & Grandad for 3 days, we arrived at Friday. Grandad came to stay with Kaelen, & Nana joined us at Australian Hearing for Jonica's initial consultation. This is a fairly simple event; no testing this time, mostly information, and not much of it new to us :-)

What was new, however, was the type of hearing aid Jonica will be getting. Hearing technology companies are bringing out new models all the time (every 12-18 months!), so although Jarrah & Kaelen initially received the same units, Jonica will receive a different unit to the one Kaelen has. (Jarrah's have been updated as part of the LOCHI study, for which we are very grateful, but Kaelen's are still the original issue.)

Jonica's will be the Nios Micro, made by Phonak. The behind-the-ear unit is about 1/3 smaller than Kaelen's, so hopefully they won't flop off her ears too much, and have nearly all the groovy new features that Jarrah's have, which is great news. We decided to get pink units, thought that was appropriate, and she had impressions of her ears taken at this appointment as well. Such a superstar, she slept through the entire impression-taking process, which involves inserting a small piece of cotton & string down the ear canal, then squirting a cool green paste into the canal and filling the ear right to the edge of the outer ear. Some babies *hate* this and scream at you...nope, not Jonica, she just slept :-)

So, in approximately 2 weeks we'll receive our 3rd set of hearing aids. Jonica will be 6wks and 3days old and should have great access to sound from then. In a funny sort of way I'm a bit impatient for this next appointment...i just can't wait for her to be able to hear everything we say to her! What was sadness in Kaelen's case is nearly excitement in Jonica's case...I'm really looking forward to her having more full access to sound and being able to make more sense of the world around her. She's begun to smile at us in the last week (at not yet 4wks old!), which is of course the cutest thing you ever saw, so it'll just be so good when she can understand us more fully.

Bring on the 15th of November!

Next appt: Wed 10th Nov - Jarrah, Aus Hearing check-up

Jonica - Audiology 2 with complete Bone Conduction results

Thurs 21st October - today we revisited Mater Audiology to attempt to complete Jonica's hearing profile; while we got lots of testing done at the last appt, we didn't get a full set of results so today the plan was to fill in the gaps. Unfortunately, in the few days leading up to today, Jonica has developed a very snuffly nose and initial readings indicate that her middle ears are not completely clear, which affects her hearing.

Our audiologist began by repeating some of last time's tests, just to confirm that things hadn't changed - always a good thing to do considering Jarrah's history! These results were mildly worse than last time so we decided to check her tympanometry (movement of the eardrum) which would give us an idea of the state of her middle ears. One side had eardrum movement but negative pressure, indicating a blocked Eustachian tube (drains the middle ear down the back of the throat), and the other side had no eardrum movement. Great. No real point continuing with air conduction testing, then...

We decided we could fill in the Bone Conduction results, since bone conduction bypasses the middle ear. Again, we checked last time's results first and they matched, so that was also good news! More good news is that technology has improved since we were here with Kaelen and they are now able to do bone conduction testing at different frequencies, previously unavailable - here are Jonica's bone conduction results:

(All have a margin of error of +/-10dB)

Bone conduction Right:

500Hz = 40dB

1kHz = 30dB

2kHz = 50dB or worse

4kHz = 50dB or worse

Bone conduction Left:

500Hz = 40dB

1kHz = 30dB

2kHz = 50dB or worse

4kHz = 50dB or worse

Tympanometry: showed middle ear dysfunction on both sides today

TEOAE: emissions absent (see entry from Kaelen's confirmation hearing test 2008 for explanation)

So, some good news here - Jonica's hearing loss appears to be mild in the low frequencies, sloping down to moderate or worse in the high frequencies. Bone conduction only tests up to 50dB, hence the "or worse" clause - her true functioning levels will be indicated when we can finish the air conduction tests after her little ears clear. But, we can say "mild"! This is cause for celebration in our house, as both Jarrah & Kaelen's losses begin at "moderate" and get worse, so for Jonica's to begin at mild is great, it means she can actually hear quite a bit of what's going on in our house, quite a lot of what i say to her at close range, it means we are definitely out of implant territory, and that in general her hearing loss is not as severe as her brothers'.

*Sigh*, it's nice to get some good news! Another test will be scheduled in 2-4weeks' time to complete the air conduction results, and we hope by then her middle ears have cleared completely.

Next appt: Friday 29th October, Jonica's initial Australian Hearing consultation

Jonica - Audiology 1

Wednesday 13th October 2010 - today was Jonica's first audiology appointment, having been referred following the hearing screens in hospital after she was born. Mum came with me which was nice, and took some photos...i'll see if i can post some so you can see what goes on during these tests.

Jonica was a good girl and slept beautifully for the entire test, so we got lots of good information. We still have to go back to complete the testing, but we got a really good idea of what we're dealing with.

I went into today preparing for the worst. We knew that we had to go into a third pregnancy prepared to have another hearing impaired baby, worst-case a profoundly deaf child, and both Keith & I had noticed that Jonica really didn't respond or startle to much. I think we had each coughed or sneezed while holding her and she hadn't jumped at all, so I was beginning to wonder if she had much hearing at all. I was doing alright until about half-way along the bus trip into town - then the anxiety of the unknown began to set in. What if she was profoundly deaf and needed cochlear implants? How much was she really hearing now, if anything? Suddenly those possibilities stared me straight in the face, and i'm thankful for the prayers of my friends for strength in that time.

Our audiologist turned out to be the same one who diagnosed Jarrah's loss 3 years ago! It was nice to see her again, although not under ideal circumstances...Jonica was already sound asleep so we got straight into testing. We completed click tests (air conduction, via a little headphone) on both sides, bone conduction on both sides (which bypasses the middle ear structures and passes sound straight to the cochlear via the skull), began some Tone Burst testing on the left side (testing different frequencies, high & mid & low sounds) and tympanometry (movement of the eardrum & middle ear pressure). These results form part of the picture, the rest will be completed at a future appointment.

It appears that Jonica has a mild-moderate loss bilaterally (both ears), which is *way* better than i was expecting. I'll post her complete results once we have them, but initial indications seem to be a sloping mild-moderate loss, between 40-60db. This is actually not quite as severe as Jarrah & Kaelen, and in my mind a cause for celebration! It seems she has quite a lot of residual hearing so she *should* actually be hearing quite a bit of what's going on. Such a sense of relief in not having to consider surgery for implants; it actually put a smile on my face to know that it seems her road will hopefully not be as hard as her brothers'... The tympanometry test showed good movement of her eardrums & no apparent blockages either in her middle ear or Eustachian tube, so these seems to be fairly reliable results.

After 1.5hrs of clicks and sitting extremely still, we were done for the day. Results will be finalised at the next appointment, although given the bone conduction results gained today we will be referred to Australian Hearing immediately. And we'll need to go see our trusty ENT again as he needs to give the OK for Jonica to be fitted with hearing aids. We signed forms at Yeerongpilly yesterday to begin Jonica's enrolment in the early intervention programme as we didn't expect today's results to contradict the newborn screens - she'll begin her sessions in 2011.

Here we go again...another bunch of extra appointments, but hopefully nothing we haven't done before...

Next appt: Thurs 21st Oct, Jonica's Audiology follow-up

Welcome, Jonica Arwyn!

OK, i'm a bit late with this...i've been busy!

On Thursday 30th Sept 2010, at 9:37am after only 5hrs of labour, we welcomed Jonica Arwyn Harbottle into our family. She weighed 3.69kg (8pd 3oz), was 49cm long and cried nicely very soon after birth :-)

We were visited by the Paediatric cardiologist that same evening, who took Jonica off to do an echo/ultrasound to check her heart situation. His words upon their return were, "Well, there's good news and good news!" Apparently he was entirely happy with what he saw, so happy that he didn't feel any follow-up was necessary. Hooray! One less complication!

On Friday we were visited by Healthy Hearing for a hearing screen. I was very up-front about my expectations for the test, ie. that i didn't expect Jonica to pass, and i think that surprised the Healthy Hearing person a bit. She in fact didn't pass the screen (called "Refer", cos it doesn't guarantee a problem) so a repeat test was scheduled for Sunday morning prior to discharge.

Sunday morning rolled around and the hearing screen was repeated. Jonica again didn't pass the screen, so we've been referred to Audiology and are waiting for call to arrange an appointment for a more in-depth test. I'll post about that test separately...

In the meantime, Jonica is doing very well - surpassed her birthweight by 7 days old and sleeps like a champion, even with 2 noisy brothers running up and down the hallway outside her room :-)

Walking like the Queen...

Not my usual style, but what i need to do for now. Why? Well, if you're on facebook & have been following my status you'll probably have a pretty good idea, but for those who aren't/haven't...

My first 2 pregnancies were "textbook"; flawless, no complications, just a few isolated contractions towards the end of Kaelen's (ie. post-36wks), nothing unexpected or out of the ordinary. This one was shaping up the same until about 5 weeks ago...

Really it started 7 weeks ago. I remember having a few "just-a-moment-i'll-be-with-you-in-a-second" contractions near the end of Kaelen's pregnancy, usually while pushing a trolley in the shops loaded with goods & a 2-yr-old, but by that time i was 36+weeks anyway, so i figured it was par for the course. What i didn't expect was to have one of those, out of the blue, sitting in the car, at 26.5weeks! Or a whole bunch more 5mins apart at 28.5weeks while at a dinner function, or another 1.5hrs-worth 2mins apart at 29.5weeks while at another dinner function...

Fortunately I'd had a Dr's appt right at 29weeks, so i described what had been going on. "Irritable uterus", he says - you really wanted to know about my uterus, didn't you? - "just take it easy, lots of fluids, if they're not regular don't worry just lie down & take some panadol. If they're regular for a long period of time, you must go to hospital & get checked." OK. So what happens when i lie down to be monitored in hospital at 29.5wks & they've been going every 2mins for the last 1.5hrs? They stop, of course...*sigh*, back home we go, although of course they start up again before we even get in the car...

So, i adjust my definition of "taking it easy", and we keep going. Things are manageable for a week or two, i have a few bad days & a few bad nights but nothing for more than an hour or so. Then approaches my "do-or-die" week, the week i knew would be the biggest, busiest, most testing week between the onset of all this & my due date. Monday, ok. Tuesday, having a few regularly-ish during the day but not for more than an hour. Wednesday, probably the biggest day of the week so far, having a few while teaching but too busy to time them, shattered by 8pm. Thursday, just made it through the day, not such a good night, nearly 2.5hrs worth but then they went away. Friday they start around 8am, still having some through the day, thankfully Nana & Grandad come & take K swimming, another hour or two at night...starting to get a little ouchy too.

Saturday, election day, we decide to go to Garden City as a family, got a few small errands to do in preparation for tomorrow's Student Concert, kids can play on the playground...we decide to be out for 3hrs max because of my "condition". We manage this, but still need to go vote later in the day. 4:45 they begin, 10mins apart but much more ouchy than before. I get dinner going, kids have a bath, a bit after 5 we go vote, back home for dinner, i go lie down to ward off contractions (every 3-5mins, they seem to settle right away), put kids to bed, me back in bed cos they're back on again. 8:45pm still happening, and getting harder to manage...we decide it's time to go get seen to. I really hope they don't stop as soon as we get there again...i mean, it would be good if they did stop, but i'd rather the medico's be able to see what's going on for real than just hear about what has happened and not be able to check it out properly.

About 9:15pm we arrive at the hospital, they strap me up to the monitors and the contractions keep going - every 2 minutes for a bit, then every 5, every 3 then every 7...regular but irregular at the same time. Midwife calls the Dr who's on for that weekend (not my usual Dr), we decide a course of drugs to attempt to halt the contractions & 2 steroid injections (!) to mature the baby's lungs a bit faster, just in case we need to deliver. Thankfully, election-counting is on TV, which helps pass the hours. By 10:30pm it's decided that i'll be staying in overnight (and we're cancelling the next day's Student Concert!), contractions are less intense and seem to be easing so Keith makes a dash home to grab me some clothes etc., and a bit after 12am he makes his delivery and returns home to relieve Nana of boy-minding. By about 1am they think to take me up to a ward, by the time we get there and settle me in and i have a few more contractions, it's nearly 2am before sleep overtakes...

6am I'm awakened by the midwife on duty for more drugs and observations; drugs every 6hrs, ob's every 4hrs, and thus begins the cycle of the next few days. On-duty Dr comes to see me, wants to keep me in overnight again to make sure things really settle & have me see my usual Dr the next day. OK, 2 nights, i can do that. A few rounds of minor squeezes through the day, but nothing like the previous night. Should i keep teaching this week? I guess that depends on when i get to go home...

Monday morning, i've had a shocking night, rounds of contractions jsut close enough to keep me awake :-s My usual Dr comes by; orders a scan to check on the growth of the baby, if everything's totally fine today then maybe, just *maybe*, i'll be allowed home tonight...but not til at least 4 or 5pm. Scan at 11am, mostly good...but she seems to spend an awfully long time examining the baby's heart - what's going on? Examination finished, sonographer says, "I'd just like to get another sonographer & the Dr, one of the valves in the heart looks just a little small; i can try to convince myself that it's ok but it just doesn't measure quite right."

Heart problems...?

Dr & senior sonographer arrive, they umm and ahh and prod and poke, and eventually decide it's best for me to return that afternoon when the Paediatric Cardiologist is in, for another scan.

Heart problems...?

The heart is structurally fine, they say, just the left side is a tiny bit smaller than the right and there are a couple of things we'd like him to check.

Heart problems...just for a second i'm overwhelmed by the thought, "my baby has heart problems!", but they reassure me that it's nothing major, they just want the Paed. Cardio to check it. Any plans for the rest of the day? How about 3:30-4pm? I'm not going anywhere, i say - and it seems i won't be going home tonight either...

3:45pm another scan with senior sonographer & Paed. Cardio. They seem to have a bit of trouble tracing where things go in some cases, which bit joins on to which. Eventually they get it figured out, do all their measurements and then, once they've finished and i make a quick trip to the bathroom, they draw me a pretty picture of a normal heart vs. our baby's heart. I must say i'm impressed by the speed and accuracy of the drawings...they must have done that before!

3 points of interest, 2 should be irrelevant after birth as they are things which normally close over after birth but appear just a little unusual in our baby. The 3rd one is a narrowing of the aorta as it takes blood off to supply internal organs. This will need to be monitored after birth; in 50% of cases it is of no consequence, and in 50% of cases it requires corrective surgery. No way of knowing at this stage what it will do, only time will tell...

Heart problems...potential post-natal heart surgery. I know thousands of people have been through that and survived (one of my good friends included), you just don't imagine it visiting your house. Keith brings the kids in for a visit near dinner time & my parents arrive too - which is great, i get to explain everything to all of them and we are all happier having reviewed the reports. Nothing we can do right now, just wait... Monday night i send on the phone cancelling my students for the rest of the term.

Tuesday i spend waiting for my Dr to arrive to see if i can go home. Finally, 3:30pm, he comes...and yes i can go home, and although i'm not officially on bed-rest and not needing ongoing drugs, he says i "need to do there what you did here"...in other words, next to nothing! I arrive home feeling amazingly fragile...was i really this bad last week & just didn't notice? We get through dinner, get the kids into bed & by then i'm ready to lie down again - i've just been out of bed for the longest stretch of time in the last 3 days, about 3hrs!

So here i am, walking like the Queen, trying very hard to be a good girl and do as little as possible while taking care of 2 small kids. People have been so generous, offering lots of help with kids & housework & meals - special thanks must go to my heart-surgery-surviving friend for coming by early in the morning & hanging washing for us (and then bringing it in for us in the afternoon too!), and to my MOPS Mums & another new friend for the offer of meals - these things are all greatly appreciated while we just try to keep this baby inside for just a few more weeks.

And thanks be to God for my irritable uterus, without which we may never have known about our little one's heart situation, potentially until it was too late.

"Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness...Though He brings grief, He will show compassion, so great is His unfailing love. For He does not willingly bring affliction or grief to the children of men." Lamentations 3:22-23, 32-33

ENT for Jarrah - Tues 10th Aug

What a lovely day for a train trip...raining! Fortunately we didn't get too wet, the rain held off for the 3 hours or so that we were in and en route to & from the city...

We haven't seen our ENT for just over 12 months now, which in ways is a good thing...he's a nice guy but we only go to see him when things aren't going well, so it's nothing personal but we'd prefer to see him as infrequently as possible, and 12 months between visits is a record for us! :-)

After looking over test results, hearing what's been going on these last 6 weeks and checking J's ears & throat, ENT says it seems J's picked up an upper respiratory tract bug (of which there seem to be a plethora this year!) which has inflamed the lining of his ears/nose/throat, hence the juicy cough, fluid behind right eardrum & discharge from left ear. We've had one round of antibiotics from the GP which seemed to help a little but didn't really knock it all off, so we've got the big guns this time - a stronger, dual action antibiotic, drops for the ear AND an inhaler for the cough! Mate, if this doesn't get rid of this bug, almost nothing will!

For now ENT is happy for the grommet to stay put, despite it having been there for 2yrs - it's still fulfilling its function by preventing the left middle ear from becoming blocked, so let's let it continue to do that. We have J's next Aus Hearing checkup in November, so the plan is to leave things as they are for now and see if the right ear has drained by then...

We then enjoyed morning tea at McDonald's (pancakes!) before the train ride home. Both boys were very good despite being cooped up in a train for 35mins each way on a rainy day...they loved looking out the window to see the other tracks, and watching other trains go past. Kaelen is much more aware of the wider world now than he was 12 months ago of course, so was just absorbing everything wherever we went.

Two exciting (?) things from Mummy's point of view about today's appointment & prescriptions: because we've passed our Medicare Safety Net threshold the ENT appt only cost us $8 (less than my return train ticket!), and, because J has a concession card for his hearing, the antibiotics only cost us $5 (that's less than the McDonald's pancakes & juice)! Sadly, the eardrops are a private prescriptions (not on PBS) so the concession card doesn't cover/affect them...but one out of two ain't bad!

Next appt: J's Aus Hearing checkup - Wed 10th November

Aus Hearing checkup - 3rd Aug 2010

Today was Kaelen's re-scheduled Australian Hearing checkup - last time we were there (May 2010) his little ears were a bit blocked up and were affecting his test results. He needed 6-8wks for this clear but the soonest appointment we could get was 12wks...

Results were much better today; although his Eustachian tubes (the ones which connect the middle ear to the throat) are apparently still/again blocked, they don't seem to be affecting his hearing as his results were within margin of error of previous tests. This is a good thing! It means we don't have to see the ENT about his middle ears...

Jarrah, on the other hand, just has one middle ear issue after another. Even though today's appointment was not for him, the audio's checked his tympanometry anyway (movement of ear drum, volume of ear space & pressure behind ear drum). His left ear still has a grommet and has been discharging on and off for nearly 5 weeks, and i've noticed a deterioration in his listening lately...how much of that is behavioural due to being unwell and how much is simply "i can't hear you" is a bit hard to tell. Measurements indicate fluid built up behind the right eardrum again, and that the grommet is not open at the moment - hardly surprising considering what's coming out of there! Fortunately we're off to the ENT next week for J anyway, so it was good to have some fresh results to take with us. Now i guess the question is...what to do?

Next appt: Tues 10th Aug - ENT for J

Aus Hearing 7th July 2010

Quick visit today - only 30mins instead of the usual 2hrs!

Today was the appointment to redo J's earmoulds which were *hopelessly* made last time. I decided to get K's other one re-done too, as it has got worse in the last 4 weeks (had one re-done about 4wks ago). Hopefully they'll get the order right this time...

J's had quite a bit of discharge from his left ear lately, which means he hasn't been able to wear that hearing aid for nearly 10 days. The grommet is still there and his middle ear & eustachian tube appear clear according to the measurements taken as Aus Hearing, so that's a good thing. K's still a little blocked, but we have another 4wks before his next appt, so hopefully he'll clear in that time.

So now we wait for the moulds to come...

Next appt: Tues 3rd Aug - K @ Aus Hearing

Aus Hearing appts - how hard can it be?!?

I rang Australian hearing today to make an appointment for new moulds for Jarrah - the set we had done on 5th May don't fit well at all, almost worse than the ones they were replacing! And the soonest i could get an appointment, and not even an entirely convenient one?

7th July.

Yes, another month away. Fortunately there's a 3 month warranty on the moulds and these ones will only be 2 months old by then...but still!

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...