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...

Jarrah - that boy is full of surprises!

Thurs 11th June - Jarrah's Australian Hearing checkup

This was due to be just a regular 6-monthly checkup...but of course, we can never tell what Jarrah's going to do! I was unable to take Jarrah to this appointment due to my music teaching, so Keith got to have his first visit to Australian Hearing.

Because Jarrah was nearly 3, they used Play Audiometry instead of the VROA (Puppet test). Play Audiometry is very similar to what we do at Speech every week with the Ling Sounds - Jarrah has to actively listen, then performs an action or repeats the sound when he hears something - so he was already quite familiar with the task. He'd only had 30mins sleep at Kindy, so I must confess i was a bit apprehensive about his state of mind...

Well, Keith came home with some interesting news...Jarrah's levels appear to have improved!! How is this possible? I don't know, but i've got an audiogram to prove it! :-)

Lower and middle frequencies appear to remain unchanged, but the higher frequencies (2kHz & 4kHz) appear to have improved by up to 20db! Instead of the higher frequencies tapering off towards the severe/profound end of the scale (80-100db), they pull back up towards normal hearing thresholds (40-50db)...very odd, considering 12 months ago we were still wondering if Jarrah was a cochlear implant candidate!

Jarrah's language has kicked up a new level recently. Since receiving his new Giraffe hearing aids (Phonak Naida V's), we've noticed that all his words have been getting clearer, and in the last 2-3 weeks there's been an added level of complexity that hasn't been there before. He's started using strings of words together, 2 & 3 or more at a time; he's started initiating conversation, stating something that happened or that he feels; he's using 'yes' & 'no' appropriately (finally!!); he's begun using quantifiers - 'lots of', 'very very', etc. It's hard to know how much of this is attributable to the Naida's and how much is developmental, but it's wonderful to hear him gaining more understanding about his world and life.

Jarrah turned 3 today, and by dinnertime tonight he really knew it was his birthday - i didn't count how many times he sang Happy Birthday during dinner! :-) We had treat breakfast (McDonald's), went to swimming lessons (where Jarrah was put up to a new class!), then came home and prepared for a small party. We just had grandparents and J's best friend and his family over for morning tea, but it was nice. This is really the first year that J has understood the idea of it being his birthday, so it was fun to see him again discovering something new.

Let's see if i can upload the latest audiogram for your viewing pleasure! :-)

It's happening! He's beginning to "speak"!

I guess this must be kinda normal for most parents, but i have to confess to being rather excited today. Kaelen has begun to make some sounds that really have meaning and intent behind them, mostly in the last week or two - "ow" or "ag" for 'meow' when looking at a cat, "aaaah-aaaah" with dropping pitch for 'round and round' when looking at a fan, "bvvv!" for 'boo!' when playing peek-a-boo, "brrr" with raspberry for 'brrrooom, brrrooom!' when playing with a car - and today he just blew the top off my expectations and "said" 2 new "words" during his speech lesson! For the first time, he copied "woof woof" (including body movement!), and "Go!" as we were rolling a ball between us.

Later in the day, while J was sleeping, K & I played with a spiral car ramp we have - you set up 2 cars in bays at the top, then press a lever to tip them up and make them go down the spiral ramp. We've been doing "1, 2, 3, Go!" with that as a good listening exercise, cos he can press the lever easily. When we played with it today, after i said "1, 2, 3, Go!" Kaelen would make his own little "Go!" sound, and then press the lever! I'm just a bit amazed at how much understanding, purpose and intent there is behind these little sounds!

When i thought about it before speech this morning, as i was preparing to tell our teacher how wonderfully he'd been doing during the week, it occurred to me that by this age (11 months), Jarrah was profoundly deaf due to compounding colds and therefore fluid in his middle ears; think of being underwater permanently, except the water's more like glue. It would be another 5 months before Jarrah would hear anything with any sort of clarity (after insertion of grommets at 16 months), another month before he would make his first sound with intent/meaning, and yet another month before he got his first hearing aids (at 18 months old). Considering Kaelen got his first hearing aids at just 3 months old, it just goes to show the value and effectiveness of that early intervention!!

It does feel a little odd, having a baby who's not yet 12 months old beginning to "say" things, when our only experience has been having been one who doesn't say anything for another nearly 6 months. It's a bit hard to know what "normal" is at the moment...although if it's what we're experiencing now, we are most grateful!

Well, it's nearly the middle of the year, which means a few things: (1) Birthdays (Jarrah turns 3 on June 13, Kaelen turns 1 on July 1), and (2) Appointments! We have regular checkups with ENT & chiro & a few others, and at the moment they're all at approximately 6 month intervals...so July is checkup month! We'll have ENT for both boys, probably Paediatrician for Kaelen, 12 month vaccinations for Kaelen, and possibly chiropractic checks for both too. Think i'll just block out the first week of July on the calendar and call it Appointment Week! Will keep you all posted on any interesting developments...

Kaelen - Aus Hearing checkup May 2009

Thurs 7th May 2009 - today was Kaelen's repeat Aus Hearing checkup, nearly 2 months after the original appointment! He had a checkup scheduled for 11th March, but testing that day was pretty inconclusive - he didn't respond as well to the testing as we'd hoped, and he was only just old enough for VROA's (Puppet test) anyway, so we had to reschedule. Welcome to government departments, the next available appointment was today, 7th May, nearly 2 months later!

Kaelen was amazing today. He's been shuffling his morning sleep a bit later recently, closer to or a bit after 10am, and this morning's appointment was 9:15am. I was hoping he might sleep in a bit this morning and therefore be in good condition and able to be awake and happy at least til 10am. When i heard him awake at 6:30am, i didn't know what was going to happen - but there was nothing i could do about it then.

We began testing soon after 9:15am; did the Left ear...did the Right ear...did Bone Conduction - and by then it was 10:15am! Kaelen was still happy and responding well, so we actually got a full set of results which, according to the senior audiologist, would normally take 2 sessions to get from a 10-month-old baby. By the time the hearing aids were adjusted and re-fitted, it was after 10:30, and Kaelen still hadn't dissolved yet. Mind you, i put him down to sleep right away, and he was out to it by 10:45am :-)

So - yes, there's still a hearing loss, but the good news is that nothing appears to have changed since his very first tests at the Mater in 2008! Hooray!!! Stable hearing levels!!

We also took the time to put Jarrah's & Kaelen's audiograms side-by-side for a comparison, just for curiosity's sake really. Interestingly, they are about the same shape, but Jarrah's loss is just slightly worse than Kaelen's. Their right ears both have a fairly flat loss, between 50-70db across the 5 tested frequencies (250Hz, 500Hz, 1kHz, 2kHz, 4kHz); their left ears have a sloping loss, starting between 50-70db across the lower 3 frequencies and sloping up to 80-90db across the higher 2 frequencies. We haven't done any genetic testing as yet, but now seeing these audiograms side-by-side, i wouldn't be at all surprised if something shows up when the time comes...

Oh, and Kaelen's latest favourite game is Peek-a-boo...when he's particularly enjoying it, he says "Bvvv!"...meaning "Boo", of course, but it's just great that he's hearing and beginning to use some simple words/sounds. May it continue!