As mentioned two days ago, Elfie and his new friend Chippie didn’t return to our home after a day of extraordinary bad behaviour from both boys.
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.
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:
- Deaf Awareness Week
- Learning a New Language
- Living with EVA
- An Experience of Baby Sign
- My Experience with Sudden Sensorineural Hearing Loss
- Our Cochlear Journey Update 3
- Hearing Matters from Action on Hearing
- Leo Supports Vlog
- Oliver Supports Vlog
- Our Deaf Journey Recap
We hope you have enjoyed the last week and also hope you have learned something as well.
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 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.