SOMETIMES by Colin Lennox
Sometimes I wonder what happened to me
Sometimes I ponder what life’s going to be
Sometimes at rest I get the odd fear
Sometimes I think will I ever hear
Sometimes just sometimes I really despair
And sometimes just sometimes think life is not fair
Then sometimes and this I think is ironic
I contemplate life when I am bionic
I try to work out without reason or ryhme
Hearing for always and not just sometime
So here is to hearing and the joy that it brings
It blesses our life with so many things
I will always remember how things turned out fine
And be thankful for this gift and not just sometime.
It is certain that prior to Harry getting sick, we had arrived at a place which we were so comfortable in, that his hearing was being taken for granted.
I no longer thought back to the struggles of getting him to wear his implants, or to the even earlier frustrating sessions at Australian Hearing testing Harry with Hearing Aids on. He was travelling so well and we could finally enjoy having a 1yr old son and all it entails.
The sore ears of my last Post developed into an infection and Harry ended up checking into the Melbourne Royal Children’s Hospital to have intravenous antibiotics administered. The chances of this happening are a small 2% of all Cochlear Implant recipients that are young children. It was just bad luck in our case.
But we were also lucky that we have such an amazing health system in this country and when it counted we were given priority by our GP, the Implant Clinic and the RCH who all worked together to make Harry better. During this saga and the weeks preceding it Harry was unable to wear his implants. In total he was without sound for 4 weeks. Considering he had sound for 5 months, that is a long time.
Even when he was well on the road to recovery he did not have the all clear to replace the implants. It was evident that our Auslan skills were enough to communicate with Harry, but that he didn’t have any skills himself. Surely the lessons we had been attending had transferred to Harry via osmosis. Despite this not being the case it was incredible the way he adapted to find other methods of communication.
One afternoon he was obviously hungry and so crawled to his highchair , climbed up to grab his bib, and bought it over to us to say ” Heh there .What about some food?”
On another occasion he hopped on his bike, rode to his bedroom and grabbed his cardigan and brought it to me. “Let’s go outside” he was saying to me.
Last Monday we went back to the Implant Clinic to be re-Mapped. The insertion of grommets to assist with drainage can make a 10% difference to the sound levels the CI recipients can hear. Harry was given grommets as part of his recovery treatment. I was also hanging in there at this appointment for confirmation that the left electrode where the infection occurred was not damaged.
I so wanted to video him putting back on the CI’s in this session as it was truly a “You tube moment”, they switched on the sound so he could hear what was happening in the room (rather than on the computer) and when I called out his name he turned to me with such a big smile on his face.
The episode in hospital really showed me that to have Cochlear Implants is a gift and at anytime in Harry’s life he may face times when he does not have access to sound and he needs to have other skills for communication.
I have often recounted to friends since getting home that when you consent to your child undergoing the surgery for Cochlear implants you only briefly scan through the risks- as you are focusing so much on the positive outcome of giving your child sound. Do we ever realise entirely the great level of responsibility we have to these kids?
It is not appropriate to use this forum for advice as this is only a log of our journey with Harry and I wouldn’t profess to be more knowledgeable than the rest of you out there. But this is my experience and I have chosen to share it with those that are interested and hopefully those on a similar journey.
At the end of the day, to put it simply, the Implants are a man-made object in the head. And if ever you are in doubt about what to do with your child with Implants who seems unwell, I would urge you to go early on to your local Implant Clinic where the ENT’s have so much more experience with implants than anyone else. Be assertive in making this happen and then the chances of there being any risks can only reduce.
Monthly Archives: September 2012
I will always remember how things turned out fine
Filed under Uncategorized
Sore ears
As a reader do you ever wonder what would happen if Harry had sore ears?
By that I mean regular ear infections, the stuff kids get all through the early years, especially when they start school. It was something I thought about when I was about to enrol him in swimming lessons for next Term- well “water familiarity” they call it rather than real lessons. He loves the water so much in the bath for me it was a natural progression.
But then this week, poor old Hazza caught a virus off sister #2 and it went straight to his ears. It also went straight to her ears, so the virus didn’t show favouritism towards the CI kid. In this case the ear infection brought with it fluid in the middle ear and according to our ENT specialist it can take a while for the fluid to drain away. So I am putting the pool on hold for now.
What has been a remarkable insight through this whole week of fever and sniffles and visits to GP’s, ENT’s and the like has been Harry’s inability to use his CI’s.
Every time I have tried to put on his headband he has started crying. For sure, his ear area is tender (I get the same response from the digital thermometer being inserted) but I wouldn’t have thought the pressure of the headband would make this worse. I have persevered everyday in case he is ready but we are still not there yet. It was not until we were at the Cochlear Implant Clinic where Harry was checked over by his surgeon that I was told that the
Mapping can sound distorted when there is fluid in the ear and the recipient may not like the way the sound “sounds”.
This week I have experienced 7 days of having a child who has temporarily chosen not to have the wonder of technology to give him access to our loud world. Up until now Harry has been hearing so much that I have almost taken for granted his ability to absorb speech and sound and communicate with us all. We have been learning Auslan for only a few weeks now but can confess we have practised our new skills very little on Harry. This week has really tested me in terms of my ability to attract his attention and let him understand what is going on around him. Learning words in a language is not the same as sentences to give commands and explain or ask things. I have realised that we need to learn short commands and action words to be able to communicate with Harry in Auslan at his age. I have no doubt that once the infection has passed and he is wearing his CI’s again he will be full of new babble and sounds that he has time to process without interruption during this quiet period.
Filed under Mapping