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...