Our Cochlear Journey Update #3


Following on from the last update where we were waiting for St Thomas’s to have a meeting to decided whether or not to proceed with Leo having Cochlear Implants. 

We received the news from St Thomas that they want to wait for a while to see if Leo’s hearing gets worse or he falls further behind with his speech levels. Although not the news we were hoping for it does sort of make sense but disappointing  none the less. 

As part of the wait and see approach they have asked our local hospital to conduct monthly hearing tests to keep an eye on Leo’s hearing levels. We had our first appointment earlier this week and the news was not great. Leo performed extremely well in his hearing test doing exactly what his Audiologists asked of him, however when they tested his right ear he didn’t respond to sounds we know in the past he has responded to. 

To say we are worried is an understatement. Up to now, although Leo has had a progressive hearing loss it has always been progressive in both ears. As we stand at the moment we are looking at his left ear with a hearing level within the severe loss and his right ear with a hearing level of a profound hearing loss. 

We have follow up appointments already booked for June and July and I will post about them when we have had them. 

My Experience of Sudden Sensorineural Hearing Loss

written by Carly Sygrove of My Hearing Loss Story


Nine months ago I was sitting in a school auditorium, listening to a guest speaker giving a presentation. I am a teacher of Early Years children, and this was part of the school training sessions, a week before the start of the new school year. I lifted my head up from writing some notes, and out of nowhere came a loud screeching sound that filled my head with pressure. The sound grew quieter into a dull ringing, but the pressure continued and I was soon feeling light-headed and disoriented. This is how I lost the hearing in my left ear. There was no accident or known infection or virus that caused it. There was nothing inside my ear blocking the sound. It was not a gradual deterioration. My hearing just disappeared. I had experienced something called sudden sensorineural hearing loss.The treatment that followed was anti-inflammatories and nasal sprays prescribed by my doctor. When these didn’t help, I was referred to a specialist, who told me to go to the hospital where I received a week-long course or intravenous corticosteroids and anti-viral medication. I continued taking the corticosteroids for another four weeks after leaving the hospital. I also received four injections of steroids directly into my ear, each a week apart. I went for an MRI scan which ruled out a tumour as the cause of my hearing loss; which of course I was relieved by. Yet nobody was able to find a cause of the loss of my hearing. Despite the medication and treatments I received, there was no improvement in my condition. I am now severely deaf in my left ear.
The obvious problem with being deaf in one ear is that I can’t hear. I have read about other people’s stories of sudden hearing loss and it seems that everybody’s experiences are unique. Many people lose their hearing in similar ways such as hearing a pop in their ear or feeling a fullness sensation in their head accompanied by pressure. Yet the after-effects can differ a lot. For me, it is not the actual deafness that is the main issue I am dealing with, but rather the other ‘hidden extras’ that come with my condition. Of course, I get frustrated by not being able to hear well. How many times can I ask my boyfriend what he has just said to me? How many times can you ask someone to repeat themselves, before they decide that what they were saying ‘doesn’t matter’? But I am facing more challenging issues than just having unilateral hearing.

With only one hearing ear, I have no idea where sound is coming from. I might hear some music or a noise, but I won’t know which way to look to see what has produced the sound. Sound localization is a skill enabled by having two working ears, not one. I find it difficult to filter out background noise. When I am in a place with sounds such as traffic, people talking or music, and somebody tries to speak to me, I cannot hear them unless they are standing very close to me on my hearing side. Another issue I am having is that I developed a sensitivity to sound. I find loud noises painful and with loud noises, my head fills with pressure. The kitchen is an orchestra of cutting sounds: water running and clinking as it splashes in the metal sink, kitchen pots and pans clanging together, the ping of the microwave and the beeping of the washing machine, and the oven fan that blends the other sounds together; making a mass of pressure in my ears. Another uncomfortable part of my day is when I open the main door to the block of apartments where I live, and am immediately faced with city sounds of traffic and people. Eating crisps, or anything crunchy such as crusty bread, sounds so loud and distorted in my head. This was originally something I found really difficult to cope with, but seems to be getting better with familiarity.

One of the most upsetting things is that I have realized that many of the things I love involve noise. I love music and listening to podcasts on my IPod. Now I no longer can enjoy music how I used to. I have programmed my earphones to filter all the sounds from music into mono so that it ensures I don’t lose the sound of the drums or vocals when using only one headphone. However, this obviously means that all the sound goes into my right ear, which is already dealing with enough right now, and soon becomes uncomfortable with the intensity of the noise.


I regularly feel exhausted. I’m not sure why. Perhaps it’s my body trying to adapt and cope with feeling off balance and sensitive to my surroundings. Everyday sounds are tiring. With tiredness comes the difficulty of concentrating on individual sounds, which in turn makes the process of hearing conversation difficult. I also have continuous tinnitus in my deaf ear. For me, my tinnitus is rarely just one constant sound, but rather a mixture. Some common sounds for me are: the sounds of swimming with my head underwater, bells, ringing and whooshing – like the sound from those corrugated plastic tubes that children swing in circles to make a noise. During the daytime I am often able to disconnect from my tinnitus, as there are usually other ‘real’ sounds to occupy my hearing. However, when I am lying in bed trying to sleep I hear only my tinnitus. Every day at this moment, I wish for silence.

There have been difficult times where I have lost my confidence or when I’ve experienced moments of sadness and the feeling of loss. I sometimes think it would be easier to have been deaf in one ear all my life, than for it just to happen to me. I know how great music can sound in stereo. I know how easy it can be to talk with people and hear their responses over background noise. I know how it feels to enjoy the loudness of the cinema or to experience the force of live music at a festival bouncing through your body. I also know there are people going through much more difficult and scary things. Yet it is only human nature to feel sad. I have felt angry at my body for letting me down. I lost a part of me that played a big role in enabling me to interact with the world. I am starting to deal with it. I will keep trying every day, to tackle the new challenges that come with my hearing loss. Eventually I want to be able to embrace my hearing loss, and not let it upset me, rather for me to take control. I want to enjoy the hearing that I do have and feel grateful for it.

 

Living with EVA

Written by Sarah and Laura of Arthurwears

You can follow Arthurwears on the following links TwitterInstagram and Facebook


Sudden hearing loss in a child can come as a huge shock. Not only does it change their perception of the world around them and put them in a potentially frightening and unfamiliar situation – it also changes the lives of those around them, who interact with them, who are used to dealing with and speaking to them in a certain way or a certain tone. It is a steep learning curve, not just for the one who has lost their sense of hearing, but those who now have to learn different ways of communicating.
Last year my younger sister, Laura, called me to tell me that my young Nephew Oliver had suffered sudden hearing loss due to what we later discovered was EVA – Enlarged Vestibular Aqueducts.

 

I am going to hand over to Laura now to tell you their story….

 

The day after my son Oliver’s fourth birthday he fell off the sofa and bumped his head on the floor. A common occurrence for Oliver. He was premature, and therefore delayed in his gross motor skills. It has meant he’s taken a lot of tumbles in his four short years so far, but my heart will still often stop for that brief moment. Usually, he gets up, brushes himself down, occasionally cries, but always carries on as normal. This time was different. This time Oliver got up, brushed himself down, had a little cry, and stopped responding to those in the room. He’d gone deaf.

 

The days after went by in a blur of hospital waiting rooms. The doctors in A and E couldn’t understand how it had happened. Oliver would need a brain scan and audiology tests. The words “brain tumour” were floated around by specialists and my worst nightmares seemed like they were being acted out before my eyes. It was a frustrating time for both myself and Oliver. I’d realised that if I got really close and shouted in his ear he could just about understand me. This was great. It meant he wasn’t profoundly deaf. For Oliver the world became a frightening place very quickly. Familiar practises were suddenly completely different; what was once a familiar and easy bedtime routine of prayers, story and bed, was now just hours of crying, and not just from Oliver. The hospital were slow to arrange tests, and they couldn’t give any answers as to why Oliver had lost most of his hearing. In the meantime, I had to try and keep life as normal as possible for Oliver, but this was so difficult. Not being able to read your son his bedtime story for the first time in his life, because he can’t hear you anymore is difficult to come to terms with… but I put on a brave face, so as not to upset him. It opens up a world of worries that you as a parent had never had to think about before, and as a parent, you’ve already got enough worries going on in your mind as it is!

 

I started to panic about everything:

 

How would he hear his morning alarm to wake up?

How would he hear an alarm in an emergency?

How would I teach him to read?

How do I talk to him when I’m driving?

How do we learn sign language?

Does he need to go to a specialist school?

 

Oliver and I were suddenly thrown into a parallel universe, and had no idea what we were doing.

 

It took almost a week for Oliver to be diagnosed, and that was after being admitted onto the Children’s ward and given a sedated MRI scan. We were taken to a quiet little treatment room and two specialist ENT doctors came to talk to us. They told us Oliver had bi-lateral EVA: Enlarged Vestibular Aqueducts in both ears. In layman’s terms, the pockets in his ears that hold fluid are abnormally large. It meant that when he fell and hit his head the impact sent a shock-wave through the fluid and damaged his hearing permanently. My son was going to be deaf forever. It sounded awful, but at the time I was just so happy he didn’t have a brain tumour. I’m a very practical person.

 

To be given this diagnosis meant I had a starting point. I needed to understand it and then I could learn ways to deal with it and give Oliver the best chances in life. I asked the doctors about the limitations Oliver would face. Due to the potential permanent damage an impact to his head can do, Oliver must refrain from any contact sports (bye bye, boxing); he cannot be exposed to rapid changes in pressure (bye bye, bungee jumping); and he cannot do activities where he jumps around (bye bye, bouncy castle).

Immediately, I realised how difficult it was going to be to try and stop a four year old jumping around. In terms of other information on the condition, the doctors had very little to offer. EVA is rare, so rare that the hospital had no literature on the topic. The ENT doctors admitted that they had actually researched it on the internet before coming to tell us the diagnosis. This did not fill me with confidence.  

 

Upon leaving, I was provided with the National Deaf Children’s Society website and told to research it myself, before returning in a few weeks to see another ENT paediatric consultant.

 

I have to say, I left rather disheartened. I was pleased we had a diagnosis, but I knew next to nothing about the condition. Only after doing my own research could I fully comprehend everything. One thing became crystal clear: the chances are, this was always going to happen. He has the condition, so it was just a matter of time until he lost his hearing. In addition to that, Oliver’s hearing could fluctuate, even if I wrapped him in cotton wool. It was highly likely that he’d lose all his hearing at some point. It meant that Oliver would need regular hearing tests with audiology, and would wear hearing aids daily. These appointments came to take over our lives in the following weeks. It was a very distressing time for both of us.

 

Before Oliver got his hearing aids we struggled to communicate. It was very stressful and noisy, with a lot of shouting, attempts at sign language, and a lot of frustration. As soon as Oliver got fitted for his hearing aids he was like his old self again. He could hear his mummy again; he knew where people were without having to physically see them; he could hear music and sing along; he was so much happier. The daytime routine settled back to almost the same as before. Night time however brought it’s own unexpected battles. Oliver took hours to settle, because the combination of darkness and silence was too much. Unexpectedly, the introduction of his hearing aids only made things worse. Going from being able to hear all day with them in, to complete silence at night, when they’re taken out, is very unsettling to such a young child. We had to quickly adapt our routine to ensure Oliver was feeling safe and secure enough to settle to sleep. Six months later I’m still ironing out the creases, but life is settling back into normality.

 

I’m not going to say it has been an easy six months. As a parent I’ve found it very difficult to find support. Often I’ve felt like I was working alone trying to arrange things for Oliver’s new routines, especially when it’s come to his education. I wasn’t given any information from the hospital about who should be contacted to let them know about Oliver’s new disability; I wasn’t told who I could talk to, to try and get support and advice, as a parent of a deaf child. The NDCS have a great website with lots of information on, and run many information programmes for parents and families of deaf children to attend for free. In July I’m due to attend a weekend programme for parents of newly diagnosed deaf children in Oliver’s age range, and I cannot wait. I feel like I’ll finally get answers to all the questions I still have, plus I’ll get to meet parents in similar situations. I have to say the hardest part about any of this is the social side.

 

Something I didn’t account for is how many parents, no matter how hard I seem to try, don’t want to organise play-dates with their children and Oliver, as he’s limited on the activities he can do. Soft-play just isn’t possible for Oliver any more, and unfortunately, that’s the popular choice for parents. It’s a little disheartening for me, as Oliver is such a lovely, sociable little boy. In all honesty, if you didn’t realise he was wearing hearing aids, you probably wouldn’t realise he was deaf. It’s the beginning of our EVA journey, and we still have a fair way to go, but so far, I think we’re coping well. Oliver especially, he’s so proud of his hearing aids and loves showing them to people, and I’m so proud of him.

 

Laura x

Learning a New Language!

I have often spoken about Leo’s hearing loss and where we are within his journey. One thing I have never written about though is the fact that since Christmas, we’ve all been learning BSL (British Sign Language) to help Leo communicate his wants and needs. It will also come in handy when he has his operation for Cochlear Implants and after he operation he will spend around four weeks with little to no hearing at all. 

Following a melt down by Leo just before Christmas when he really wanted something but couldn’t, no matter how hard he tried, to communicate with us what he wanted Keighley and I made the decision to start learning and teaching Leo some basis sign language. 

We’ve learnt quite a few words in a relatively short period of time. As is the norm with kids he has picked it up a lot quicker then we have. 

We have been using various resources including a book lent to us by his Play Therapist. The biggest resource we’ve used though is the BSL Website which has images of words with the hand movements shown. We have also used various videos from YouTube as well. 

Between us we have learnt words such as mummy, daddy, please, thank you, eat, drink, dinner, Peppa Pig, Fireman Sam, sorry and many more. 

We’ve found that a combination of using the sign whilst saying the word at the same time has helped Leo to start saying certain words, which is fantastic. 

Keighley and myself are attending a taster session for a course this coming Saturday and we are looking forward to it. I will let you know what we learn. 

To learn more about BSL click here

Best of Worst

Hearing Loss Awareness Week 2017 


Today the 15th May marks the start of Deaf Awareness Week 2017, this is a cause close to our hearts in our family due to the fact that both my wife and my youngest son have a Hearing Loss. 

Through the course of this week we have some fantastic guest blogs for you to enjoy, updates from our family journey and also some facts and figures from Simon Robb at Action of Hearing. 

Our guest bloggers this week are as follows: 

Living with EVA: An account of a family living with an EVA (Enlarged Vestibular Aqueducts) diagnosis written by Sarah and her sister Laura. 

Sarah blogs at Arthur Wears

Baby Sign: An Experience of Baby Sign Language written by Hollie. 

Hollie blogs at Thrifty Mum

and

Sudden Sensorineural Hearing loss (SSHL): One persons experince of suddenly loosing their hearing later in life. Written by Carly Sygrove. 

Carly blogs at My Hearing Loss Story

We hope you enjoy this week, however we also hope you take something away from it as well. Let us know via our social media or in the comments section on each post. 

Two Years of Hearing Aids

On this day two years ago Leo received his first pair of hearing aids.

Having been diagnosed with a hearing loss during his New Born Hearing Screening Test after they failed to get a result Leo was sent for further testing including a NBR which is a test they do when the child is asleep to see if they can get any feedback on his/her hearing.

Following the tests they did Leo’s audiologist sat down with Keighley and my Mother in Law and explained that he had a hearing loss and that he would need hearing aids. This was around Easter time two years ago.

It’s hard to believe that it’s been two years as so much has happened in that time including an MRI Scan, Genetic Testing and a referral to St Thomas Hospital for Cochlear Implant assessment after Leo had a further hearing loss in December last year.

In those two years we have had times when he has been great wearing his aids, he started off so well and then he figured out that he could remove them and either throw them or in a few cases feed them to the dog. Each and everytime his audiology team have just replaced them and we’ve moved on. We’ve had more molds then I can remember because Leo was growing so quickly as a baby he would need them redone every week. 

It’s been a tough journey the last two years and a steep learning curve but it’s also been an amazing one as we have a learnt a lot. We’ve also watched Oliver learn to watch out for his brothers hearing aids as well as his brother when they are out playing. Both the boys have learnt some basic sign language and that is continuing and it’s amazing to see how well they both adapt to the situations we have thrown at us.

I’m gonna leave this Post with the video of Leo getting his hearing aids for the first time and having them switched on. To me it’s still as amazing now as it was then.

 

The Pioneers of Disability Sport.

I have often written about the Hearing Loss within our family and in fact we are currently on our Cochlear Implant Journey with Leo. So when I was contacted to talk about ‘The Pioneers of Disability Sport’ on the blog I was quick to agree.

I’m going to be honest as a child I hated sports and pretty much everything to do with them and for the most part now that I’m an adult and a parent I still don’t give much if any time over to sports. However I was always, and still am, interested when the likes of the Olympics come round.

As a child I loved the Olympics, I loved the hype and seeing countries in the world that would normally not have a lot to do with each other competing peacefully side by side. It wasn’t until the 2012 London Olympics that I became aware of the Paralympics.

When Channel 4 ran their adverts calling them Super Humans I thought they were being insensitive and a little condescending, however when I watched them I was astounded by what these people could achieve and I was humbled that my attitude to sport was so bad. These people regardless of their ability were just amazing to watch as they excelled in whatever sport they were competing in.

Having a son and a wife who have hearing loss has made me re-evaluate the world in which we live. Deafness is often brushed aside by people as it is essentially an invisible disability and I have come across many people who are just plain rude about it. However with people like those listed on the Infographic above I know that the world is moving, albeit, slowly towards making it a better place.

The people mentioned within the Infographic are the Pioneers as it states, however it has meant that the world is a lot more open and accepting then it was 100 years ago, hell its even more accepting then it was 40 years ago. Who knows we might even have a Pioneer in our midst’s today.

For more information head to: Bristol Street Versa and New Wheelchair Vehicles

 

Please Note: 2 Bottles of Milk has been paid to talk about The Pioneers of Disability Sport and to Supply the Links above. However what has been written about sport and hearing loss is a from the heart account of the authors feelings on the matter. The Infographic has been supplied for our use.

Balance Testing! What I’m Expecting!


Today we are on our way to GOSH in London for an appointment that I’ve been dreading, Leo is having a Balance Test. 

Due to his hearing loss and also because it is getting worse we’ve noticed that he isn’t as stable on his feet as other kids his age and therefore were referred to have his balance checked. Now this is all well and good until we received the pack from the hospital detailing what they are going to be doing. When I read it I was filled with dread and a guilt that he is going to have to go through what they are going to do. I know that it is for his benefit and hopefully they will be able to help support us and him with working on his balance as this is particularly important due to the fact Leo has EVA. However as a parent you never want to place your child in a situation they will be uncomfortable in or that you know is likely to distress them and that is essentially what we are doing today. 

In the long run I know this to for Leo’s well being and that it is all to help him and us make his way in this world full of accidents waiting to happen etc… 

… and I know that if all goes according to plan he will benefit from what they are doing but with at least three hours of testing ahead of us it doesn’t make it any easier knowing that. 

Our Cochlear Journey!


So yesterday marked the start of our Cochlear Journey for Leo…

We had an appointment at St Thomas’s Hospital in London for a briefing on what is going to happen. Some of the information we knew because of already having a Cochlear Implant but there was a lot for me that was new. We have a couple of busy months ahead with the appointments that we have scheduled, and although I have a lot to process on certain elements of what is going to happen I know that this is what is best for Leo, if we are successful and eligible for an implant. 

We know that if eligible we are going to go ahead but there are some questions we still need to answer in our minds, they will be answered over the next two months, for now I am just going to read up on what they gave us and both Keighley and I are going to look at the different brands on the market that the hospital uses so we have a better understanding on what the benefits are of one brand over another. 

Change


Every now and then there comes a moment in your life, where either forced or by choice we make a change within our life and the way we do things.

Some of the most noticeable and most common of these are things like getting married, moving house and of course having kids…

The Old Job!
Well between Christmas and New Year we had a change essentially thrust upon us as a family.

Late last year we discovered that our youngest sons hearing had gotten worse between hearing tests and the audiologists at our local hospital refered Leo to have Cochlear Implants. Well I was taken aback when a wedge of letters came through the door all with appointments for the Cochlear Implant Centre and this was on top of his normal appointments and meeting he has with his paediatrician, Teacher of the Deaf, Play Therapist and his Audioloists.

The New Job!
As a parents we had a decision to make, mainly how on earth are we going to juggle all these appointments with both working full time, my wife’s studies and everything else we had to do in life, like shopping and actually spending time as a family.

As of earlier this month I became a stay at home dad, we reached this decision to help aleave some of the stress that both of us working would cause with multiple appointments on top of that. It wasn’t an overly easy choice but a choice that had to be made. It is also a choice that makes a lot of sense for all of us as a family.

This year is certainly going to be a busy one, however it is also going to be a fun one and a good one. Its one that we will keep you up to date with our goings on.