Facing and Embracing The Music (Part 3)

A few weeks after our bitterly disappointing wild goose chase, it was time to take The Guy to specialists number 3 and 4 and hopefully put the guessing game surrounding our concerns about his hearing and speech to bed at long last. I’m not sure who was more hopeful that this was to be our final answer-seeking mission – the parental unit, or the trembling bank account! The day of reckoning had finally dawned and I was ready to grab it by the horns! But first… work.

After depositing my herd at school I wish I could say I spent a productive morning at the office. In reality, I got down to some heavy paper shuffling, serious clock watching, finger drumming and nail-biting (because nails get in the way of drumming). I willed the two-hour wait to fly by so that I could get the show on the road and fetch The Guy from school for what I hoped would be the last step of this journey.

When the magic hour arrived I was up like a shot, charging out of my office and across the street to fetch my little man from his classroom. (I work right across the road – convenient, right?). It would, however, be the last convenient trip of the day because unfortunately for us the two appointments were two hours apart and on completely opposite sides of town. The timing was going to be pretty tight, but I was confident that SuperMom and SlobberySidekick were up to the task!

Up the hill we charged to the second-opinion ENT who is stationed in the swanky new private hospital that you would be forgiven for confusing with a luxury hotel. Our timing was impeccable, however the ENT was running about forty minutes late, as specialists are understandably prone to do. The poor receptionist was so apologetic about our wait, suggesting that we take a walk and she would call me when it was time, but it was not necessary. The waiting room had been designed with kids in mind, and The Guy had already made himself comfortable at a little table and was busy doing a puzzle quietly in the corner, perfectly happy with the way his morning was panning out.

Fun in the waiting room

When it was our turn to see the doc I was reassured and impressed at the attention he afforded us when listening to the details of the background story, his patience with The Guy when he examined him, and the thoroughness of the examination itself. It did not feel rushed, and although the doctor admitted that it’s quite tricky to correctly assess a child of this age, especially one who hardly speaks and is therefore unable to give feedback, he persevered and got the results that he set out to obtain.

I cannot tell you the names of all of the instruments that were used, but I do know that there were various tests to determine pressure in the ear, a basic hearing test and one to measure the response of the brain to sound waves – a reaction means that the sound has been ‘heard’. Fascinating! The outcome was, ironically, exactly the same as the first ENT’s – no fluid build-up behind the eardrum, no apparent obstructions, no need for theatre.  The last time I received this news I felt crushed, because not only did it take away my belief in a ‘quick fix’ solution, but I left the first ENT’s rooms feeling like we had been brushed off, and full of doubt. Because of the nature of this second consultation, I left these rooms with far more information, and even though it essentially didn’t tell me anything new, I was at peace with the outcome this time. Isn’t it amazing that, when it comes to things that we don’t really understand, the way we are handled can make all the difference?

Because The Guy had just done (and passed) a hearing test I questioned if it was still worth taking him to the Paediatric Audiologists who we were heading off to see next, and was reassured that we should definitely keep that appointment. Apparently the test done in the ENT’s rooms was a very simple one and it was strongly recommended that we let the professionals take a look and have the final say.

As soon as we got into the car, my well-trained guy, remembering his last day of doctors with mom, optimistically asked for his milkshake date, but unfortunately this time I had to shake my head, put foot on the gas and (within legal limits) fly back down the hill, blocking out the loud protests coming from the back seat. We were on a tight deadline – milkshakes would have to wait.

Man down!

We arrived at our destination in the nick of time and guess what? The patient was fast asleep! And when this child sleeps, he really sleeps, waking for nothing until he’s ready to rejoin the world. Oh dear. With no on-premises parking at the Audiologist’s rooms, the closest parking that I could find was about 100m up the road, so there I was, deeply traumatised after having to remember how to parallel park, running high on adrenaline from racing the clock, and lugging a deadweight body down a street in an unfamiliar neighbourhood. To complete the picture, there was very definitely a suspicious smell coming from the pants of the patient. It was a great moment for me, a great moment.

I have never been more grateful for a delayed appointment in my life as I screeched into the bathrooms, and gave the sleeping kid a quick ‘spring clean’. At least it woke him up because I have no idea how you’re supposed to do a hearing test on a sleeping child.

Hi there, sleepy-head!

After a very quick wait we were welcomed into the consultation room, and what followed was a session of pure fun! The Guy was taken into a soundproof room within the room, where he sat with one Audiologist while a second Audiologist sat ‘on the decks’ outside, monitoring him through a window and working an extensive array of buttons and gadgets. The Guy played ‘games’ where he was required to perform a task every time he heard a sound (varying volumes and pitches were used) or identify where the sounds were coming from, being rewarded with a stuffed toy inside a flashing box when he guessed correctly, or repeat words being said through headphones. He had an absolute blast, and I was so proud watching him following all of the instructions and going through the necessary motions so well!

Such fun!

Seeing the way that these two ladies worked with my little Guy, and seeing how much fun he was having with them, I wish that this consultancy had been our first stop. Not only was the examination incredibly thorough, but the team was friendly and caring, putting both patient and parent at ease from the minute we arrived. The feedback was positive and easy to understand.

So, what was the feedback? The Guy’s hearing tests determined that his range of hearing is on the lower side of the ‘normal hearing range’ scale, and although it could possibly indicate a bit of a concern with his hearing, the doctor felt that it was more likely to have been attributed to him being very young, tired and losing concentration at the end of the hour-long session. She wasn’t in the least bit concerned about it, which meant that I wasn’t either. She did admit that his speech is very… ‘creative’, and that he will definitely need to go to speech therapy, but we knew that that was coming anyway, so no shocks there!

I got a milkshake too!

And so it was that this leg of our mission came to an end! At the end of the day, do we regret spending precious leave days, time and bucket loads of cash on multiple specialists, only to find out that there’s actually nothing to find out? No. No, we do not. It has put our minds at ease, and now we know that we can unreservedly throw ourselves into speech therapy without being held back by something unseen.

In the end, we have been lucky- it’s a straight-forward, commonplace obstacle, one that will take time and patience to correct, but one that can absolutely be overcome. The Guy has the biggest cheerleaders on his team, and we’re all willing to do whatever it takes to help him be better understood. (Except for his word ‘huggle’ when he’s trying to say cuddle because he can’t say ‘c’ – we will never point that out to him because it’s so darn cute!!)

While our experience was a brief one and has had a simple outcome, this journey has made me realise just how many families have a far more complicated path to walk with their own children. Sometimes there are just no easy fixes. Sometimes you can’t manipulate time and can do nothing but adapt or wait.  

During the course of this voyage so many people have reached out to us with their own stories.  We have learnt of so many children whose diagnosis’s will echo throughout their lives, and of their families who support them and cheer them on with every step. Thank you to everybody who has shared their own experiences with us so freely. To those families, I see you, and to you, I take off my hat.  

2 thoughts on “Facing and Embracing The Music (Part 3)”

  1. So glad the outcome has been positive. Going through pretty much any medical journey can make you feel so powerless. Hearing other people’s stories has helped me in our journey also. I’m sure the speech therapy will go amazingly and The Guy will come out tops.
    I take my hat off to you for being so brave and sharing your journey and life with us.

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