Over the last few months we have written regularly about Leo’s Hearing Loss and his Assessment Process for Cochlear Implants at London’s St Thomas Hospital.
To say that this journey has been emotional is an understatement and it has also been stressful for Leo. It is a journey that has taken longer then we expected, however since we last wrote we have had some huge developments and his journey has moved forward significantly which has been a good yet stressful and emotional time.
As mentioned in our last post Leo was offered Cochlear Implants and was expected to under go implantation at some point during November. However on a recent appointment we were told that because Leo didn’t completely fit the NICE guidelines for Implantation then there could be a funding issue. Leo’s Hearing was 5db above the guidelines in one ear. To say that this appointment was emotional would be true however those emotions ran high a couple of times with tears of frustration and numerous questions on what the next step was and what sort of funding might be obtained to allow the operation to go ahead.
Since then Leo has had his operation and although the actually surgery went well his recovery wasn’t as smooth as planned but he was up and about and discharged the next day which was good.
Over the past few weeks he has coped remarkably well considering he has had little to no hearing, he has attended preschool with no problems and has just gotten on with life like the Leo we love.
Leo has now had his switch on and has adapting to wearing processors, however I will write more about that just after Christmas once he’s had a chance to wear them a little longer.
The day before we jetted off to Athens to visit family we had another appointment at St Thomas’s as part of Leo’s Cochlear Implant assessment.
Following on from the last appointment where we had been asked to practice a new testing technique with Leo and develop that.
During the appointment the audiologist tried a the testing technique with Leo that we had been practicing and to start with he was doing exactly what he was meant to do, which was place a figure in a boat every time he heard a noise. However due to his age after a while he lost interest and just wanted to play what he wanted to play.
Around this time however the audiologist needed to go and get some extra equipment and left us in the room with Leos hospital speech therapist who watched Leo as he played and also spoke with myself and Keighley on how we thought his speech was developing, after a while she stated that although Leo knew exactly what was happening however apart from the occasional word we as adults weren’t really aware of what was happening to the toys and what their adventure was.
Following all the hearing tests we spoke with both the Audiologist and Speech Therapist and they said that they had a joint meeting coming up where they were going to discuss Leo and decide on the next steps to be taken however they both stated that there had been very little speech development since the last meeting back in April and they were hinting that they would be pushing for Leo to proceed with Cochlear Implant Implantation.
Since the visit the team at the hospital have had their meeting and via a phone call have confirmed that Leo has been offered Cochlear Implants and will under go surgery before Christmas of this year, most likely early to mid November.
Today Leo had a follow up appointment at St Thomas’ after his three month referral back to our local hospital for further hearing tests. During the last three months it looks like, from the hearing tests that Leo might well have had a further loss in his right ear, however this wasn’t confirmed today as he wasn’t testing well. Unfortunately Leo has reached the age where the sound and turn method doesn’t work anymore.
What’s the sound and turn method? I hear you ask… well it is basically what it sounds like. The audiologist plays a sound into Leo’s ear and if he turns towards the sound he is rewarded with either, in our local hospitals case, a dancing (and honestly quite freaky) puppet, or in St Thomas’ case, an image of a cartoon character on a screen. This works fantastically with younger children but Leo has done this test so often it now bores him after a while and he becomes engrossed in either the toys in front of him or pulling the testing equipment off himself. So today they have introduced a new way of testing him which requires him to hold a little figure and when he hears the sound to drop it into a pot. This is going to require practice as although he seems to get the idea of the exercise the patience of the waiting isn’t quite there so we need to train him to do it.
Due to this stage we are at the audiologst has said that they are possibly going to consider a test called an ABR. This is something we really wanted to avoid as it requires Leo being put to sleep and electrodes placed on his head to get the readings they are after. Although this will get the results they are looking for it would have been better if we had been able to get those same results by the other tests.
Today marks the end of Deaf Awareness Week. During the last week we have had a number of posts from some great bloggers. We’ve covered everything from Baby Sign through to Facts and Figures from Action on Hearing.
I would like to thank our guest bloggers who are either themselves featured in the photo above or their children are.
You can read this weeks posts by clicking the links below:
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.
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 Implantassessment 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.
It’s been a while since I wrote a piece on Leo’s Cochlear Journey and thought that it was time to correct that.
Today in London after numerous appointments, hearing tests and speech and language sessions the team of people behind Leo’s care are all going to be making a decision on how to proceed, there are two options that could come out of this meeting. The first is that they are going to advise us that the best course of action for Leo is that he has Cochlear Implants now and that everything gears up for this. The second and from how things seem to have been going and from little snippets of what was/wasn’t said in his appointments the more likely scenario, is that they will want to defer Leo for five months and refer him back to our local hospital for regular hearing tests and care with the team of people local to us.
A Bit of Brackground
Back in October of last year Leo had an MRI scan at our local hospital to see if they could see why Leo has a hearing loss and as a result of said MRI Scan they diagnosed EVA (Enlarged Vestibular Aquaducts). Basically this meant that we had to be extremely careful with Leo bumping his head as it could cause a loss of hearing, not an easy thing for a boy that loves anything that involves climbing or being extremely active.
Following on from that diagnosis Leo had a hearing test in December of last year, in which we discovered that Leo had had a further loss in hearing. The decision was then taken to refer him to St Thomas Hospital for assessment for Cochlear Implants.
Where We Are Currently
Well a lot has changed in the last couple of months we’ve been travelling to St Thomas and a lot hasn’t.
The main thing that hasn’t changed is that Leo’s hearing at the moment hasn’t got any worse. Which is a good thing.
On the flip side we have discovered thanks to St Thomas that Leo doesn’t have EVA (Enlarged Vestibular Aquaducts) at all and although this is a good thing it does open some more questions.
Whatever happens in the meeting today one thing is certain it will definitely mean more appointments be they in London or Southend I know that Leo will get the best care both can give and that’s all that matters.
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.
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.
Today 25th February is International Cochlear Implant Day.
As a family who had a Cochlear Implant User in the household and also going through the process at the moment to see if Leo is eligible to receive Cochlear Implants this year I thought it would be good to look at the history of these fantastic devices.
60 Years ago today, two French scientists by the names of Djourno and Eyres performed the first auditory nerve stimulation using electrical currents by placing an electrode outside the Cochlear.
In 1978 the first ever Cochlear Implant was performed by Doctor Graeme Clark when he performed surgery on Rod Saunders who has lost his hearing during a car accident.
Now I know that when we went to Leo’s initial consultation and we were shown how small the wire that is implanted into the Cochlear is I was astounded by how tiny it was, it is literally small then the nail on your small finger when it’s all coiled up. So in 1978 this was a huge break through and an amazing achievement.
By 1998 Cochlear Implants as we know them today had been developed and were beginning to be used in hospitals around the world.
My wife has said that she would not be without hers and as we journey with Leo through his assessment stage and then on to the decision stage that we know that if he is suitable for Cochlear Implants then we will proceed with them as they will give him consistent hearing throughout his life without the risk of continual hearing loss that he has now.
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.