Hearing aids & Audiograms - Glue ear hearing loss

You can pick from lots of different colours when you get your moulds made, there's even clear and sparkly ones. Was great to see the choice available to kids to help them feel it's still something fun. Obviously Elis will get a say when he's older but for now I picked these blue moulds as I love the colour on him and I hoped it would make them fairly easy to find.

I thought it was time to give you all an update on Elis' journey with hearing aids. Some of you may recall my post earlier this year about his moderate hearing loss due to glue ear, something children with achondroplasia are quite prone to (you can find the previous post HERE). Last time I wrote we'd decided to go down the route of hearing aids before considering grommets as that involves general anesthetic and they unfortunately seem to fall out early often in kids with achon from what I've heard from others.

Getting the hearing aids

We made the decision to try aids first in early March: just before covid-19 lockdown happened in Scotland. We'd been told that we'd have a 4-6 week wait for the moulds of his ears and receiving his aids (that meant we expected to receive them mid to late April). However, lucky us got a call within a few days saying we could come in already the next week to collect them. This was followed up with another call half an hour later. There had been a late cancellation and were we able to come in the very next day. This meant we received his hearing aids a week after making the molds (Thank you so so much NHS Tayside!). We didn't know it at the time but only a week later we had to self isolate and the week after that the country was in lockdown and we wouldn't have been able to get his next appointment as all non-urgent appointments were put on hold. If we had opted for a grommet operation I imagine we would still be sitting here without any progress being made while waiting on an operation date.

The appointment consisted of re doing all of the tests that had been done the week prior to get the most accurate results before they calibrate the aids. The tech they use is pretty cool and I'll hopefully be able to share a bit more about the ins and outs of how it works in the future. Our audiologist seems to enjoy my keen interest in understanding everything that's happening and I'd love to share it with my readers. Once the aids have been set up to amplify the necessary sounds (while also being amazing enough that they do not do anything to the sound level of ALL sounds - so loud noises shouldn't affect him any more than any other child when the aids are in) they obviously need to be tested on the patient to make sure they really do make a difference. 

His initial reaction so telling that he could notice a difference, he wasn't facing the audiologist and was quite engrossed with a toy when the aids were put in and turned on. His whole demeanor changed at the first sound he heard, his back straightened and I could just about glimpse an intrigued smile. The test after went alright, but we had been in there for a while and he was definitely losing interest in the whole affair so we decided to call it a day. We had a quick run through of how the hearing aids work, how to put them in his ears, what I need to do to keep them clean (plus how to reassemble them) and how to change the batteries.

Audiograms

source of graph: https://images.app.goo.gl/rhgrdygmLALLGsVz6

Above is a graph of the phonic sounds (the sounds used in the English language) in the form of a audiogram. It relates which phonics are heard within which decibels + frequencies and outlines what the different scopes of hearing loss entail. Elis' audiologist showed me an audiogram like this alongside Elis' own one to help explain the level of hearing loss he was experiencing. I found it so insightful as so many of his own attempts at speaking made more sense. He'd clearly been hitting the syllables of words but often losing the defined sound. Seeing this graph wasn't just a good visualisation but correlated with the sounds I felt he was missing very accurately. Below are the graphs for his right and left ears back in march. The line with circles (right ear) and x's (left ear) show his hearing, or rather lack thereof and clearly puts him in the bracket of having moderate hearing loss if you look at the audiogram above. These two readings were done with a tympanometry test where a tube is placed in the ear and air is blown in to measure how flexible the ear drum is (I talk more about the tests done in this previous post found HERE). As always his readings were clearly indicative of glue ear. This was further confirmed with the other reading you can see marked with triangles. This test sends the sounds past the ear drum as they hold their device to the bone behind the ear and check whether the issues lies within the ear drum or past it. As you can see his hearing is within the range of someone without any hearing loss at all. This, for us, is of course the best case scenario as it means he can hear but the fluid build up of his glue ear is what prevents it. 

The hearing aids usually get re-calibrated regularly as the level of hearing often changes in those with glue ear due to the pressure changes; this has not happened during our 6+ months at home. But we honestly can't thank our lucky stars enough for getting them before coronavirus put life on hold because the progress he has made in the past months has just been wonderful to see. 

His progress

His understanding of verbal instructions has improved vastly, even when he chooses not to wear his aids we notice that he understands us better. He is happy to wear his aids most of the time and very rarely pulls them out once in. He has gone through a few spells of being adamant that he will not wear them over the last half year. But having had phone and email contact with his audiologist neither one of us have been concerned by this as it is likely that he has noticed a difference in his own hearing and not needed them. He also has a tendency to request to have them put in by pointing at his ears. A habit I'm grateful for as I can sometimes forget to put them in, but it also shows me that he must notice the difference when they are in.

We did have one bad mishap where the aids got soaked (they can take light splashes but are not waterproof) but as all the calibrations are saved on computers these days I could email his audiologist and he posted new bits out for us. The whole thing was sorted in a matter of days despite being in phase 1 of the exit out of lockdown. We have other moments of panic when one has been missing or a part of it has, but thankfully they've usually been found and the longer we've had them the less they've been lost. Conveniently they make a rather horrible sound when they are not attached to the ear properly so I can often hear when they've been taken out (and the older two are now great at letting us know if they aren't in his ears as well).

The starkest difference has of course being his own speech progress. When we went into lockdown Elis pretty much only said "Mamma" "Pappa" and "Sessa" (what he calls his sisters - although even that sounded more like a "dedda", which we now know was down to him not hearing "S" very well). Within the first 3 months we saw a HUGE increase in the words he could say. Where he doesn't pronounce clear words he has compensated with very clear sounds (he also uses gestures a lot more), whether they are animals sounds or saying "nom nom" for food/being hungry.

Of course he's still behind, but there are continuously new words and sounds being added to his vocabulary and communication which is so encouraging to see. He's also much happier the more we can understand him. And if I think back at our eldest who had selective mutism as a toddler, she was really not far ahead of where Elis is as 2.5 years' age and you would never tell that she was a delayed speaker at all (the only lisp is the one caused by her missing front teeth and she literally will not stop talking). So knowing how far she's come between then and now as a 6.5 year old I have a very good feeling about Elis' progress as long as he continues his trend of steadily adding words.

These are just some of the words he has gained since the end of March that I can think of off the top of my head: open, up (up there), down, uh oh, yes, no, outside, inside, juice (used for all drinks, in particular water - even if he just wants to play with it), poo, chapchor (tractor), choo-choo (train), baby, nom nom, var är ... (where is), Sessa, Belle (one of our dogs), Ooo oo (dog howl which he does to indicate any dog he sees), baa (sheep), hoo hoo (owl), anka (duck in swedish, which is every bird apparently), äta (swedish for eat), awow (away), ba ba ba (bad - when he tells us off or doesn't agree with us), spash (splash), I daw (I draw/want to draw). There's more words, sounds and gestures and we are constantly surprised by new ones that crop up. He's also more vocal in general and even when it's just babbling there's a wider array of sounds and he seems to be trying harder to share what he wants. 

I've already said it but I really am so thankful that we got his hearing aids before lockdown would've delayed the help. I think the progress he's made the last 7 months has been crucial. Hopefully we can soon meet out audiologist in person so he can re calibrate the aids but I really feel this has made such a positive difference for Elis' speech development. He's at an age where a lot of very important progress has to be made for a child to grasp language well long term so it's been so important for him to have this opportunity. If you have any concerns about your child's hearing push for help and explore all the available options. We're lucky that Elis has taken to the aids so well and that we're seeing a difference, but if they hadn't have helped or if he refused to wear them completely we'd currently be pushing hard on grommets being put in to help drain the fluids that prevent him from hearing. I'm glad we tried the less invasive option first but only you can decide what is best for your own circumstances.