Tuesday 22 June 2010

The next most important part of Oliver's journey in the deaf world was his second hospital appointment. Mark came with me this time as I needed the support and He wanted to know for himself what was going to happen next.
It was a day of firsts for us. It was when we first met Oliver's teacher of the deaf, his paediatric consultant, we learnt the basic biology of the ear. In fact I remember coming away from the appointment slightly overwhelmed at the prospect of having so much information to process.
It was all quite daunting walking in to the private room we were offered, obviously there was nothing that showed he was a very deaf little boy so it was quite weird waiting to discuss something that we couldn't see and couldn't prove. A lot of faith was needed on our part. He was a newborn and looked very normal and healthy to me. There is no indication when they are babies that anything is wrong because he starts of the same. He can't talk or communicate to anybody his wants and his needs. He cried like a hearing baby and made cute noises as he grew like a hearing baby. In fact I can safely say I was definitely in denial about Oliver's deafness.
After just a few minutes of being in the private hospital room I felt a lot easier about the little chat that had been arranged for us. A nurse entered the room followed by Rosemary, Oliver's teacher of the deaf and Tracey his paediatric consultant. Tracey introduced herself and the rest of her colleagues and started talking about Oliver's results in detail. In fact I really didn't understand at first what she was talking about...decibels and frequencies to sound were all new to me. Mark being a little more intelligent than me seemed to be understanding more than I did and I quickly relied on that intelligence to fill me in later on the basics. If only I knew then what I know now. Decibels are common knowledge to me now and speech frequencies. I can talk about the biology of the ear quite happily and understand the ins and outs of hearing tests. This is definitely one of the advantages you can gain of something that can seem like one big disadvantage. The knowledge that you can gain from such an experience is kind of wonderful. It opens new doors which I will talk about further on in my blog.......anyway went on a little detour there.
Tracey the paediatrician mentioned that Oliver was severe/profoundly deaf which meant that he could hear at about 90-120 dbl. In object noise that basically means standing right next to a very loud speaker at Glastonbury and only just hearing it. He was very much in the deaf world.
My little baby boy who we waited for, for 3 years of trying for him had no apparent outward disabilities was not going to hear my voice, neither did he hear me when I spoke softly to him when he was in my tummy. I was upset but I never showed it. I guess I thought the worst at that point and never even imagined the miracle that would happen to him when he was just two...and again more of that later.
Tracey showed us a model of the ear and explained some possibilities of why he was deaf and that this area would be tested at a later date. She mentioned hearing aids and lots of hospital appointments at first. Rosemary explained her role and that she would visit Oliver at home and monitor his progress with hearing aids etc. You can see from all the information that it was quite a lot to take in at the time. I seemed to remember it though. Mainly because in my mind I knew that all this information was vitally important.
One part I did remember which was quite funny really and puts a lighter side to the cynicism is that Oliver gained a bit of a nickname for himself as he was quite a windy baby so they called him farty pants. I mention that because the nurse had to collect a wee sample from him and she placed a little bag on him and he took ages producing a wee and he kept trumping instead. Must of been what I ate the day before that didn't agree with him.
After the appointment Mark and I went home and felt a little more at ease about knowing what lay ahead in the next few months. It's important even when you are feeling shocked and unsure about the future for your deaf child that you ask lots of questions and get the information that is entitled to you and also the support that is entitled to you. I guarantee that when you do you feel more comfortable about the future of your child. In my next entry I will talk about Oliver's hearing aid journey. Thank you for reading x

Monday 21 June 2010



Monday's are always a lazy day for me. I do the routine in the morning of getting Oliver's breakfast, dressing him and putting his processor's on so he can hear us. The rest is add lib I guess. Usually laundry and cleaning up from the weekend. Why is it the house is always so much more untidy when it's the weekend.
One of the main reasons i wanted to create a blog was for Oliver's progression with his Cochlear implants. I might actually start from the beginning and those who want to follow along his journey can do so.
Oliver Andrews was born 28Th July 2006 on a Friday, early morning about 2.10am. He was 38 weeks when he arrived as I was induced because they initially thought I had a liver condition which would have been dangerous for mine and Oliver's health. It turned out thankfully that it was all okay.
His new born screening test was that afternoon for his hearing as it was mandatory that all new born babies have a new born screening test since September 2005. He failed that test and I thought nothing of it at first, as I was told it was probably because he had a lot of mucus as he was being sick a lot. He had another test just to check and the results were the same. I was still undeterred.
17 days past, not without it's trials as we were admitted back into hospital because Oliver had jaundice. He had to have light therapy for 4 days to help him recover.An appointment was made for the hearing clinic mainly because he had been on antibiotics and it's kind of mandatory for newborn babies if this happens.
We went to the hearing clinic at the hospital. My initial thought just before I went in was that" I would be in and out within 30 mins. Get the test done then go shopping." How wrong was I. They were all very pleasant and told me I needed to have Oliver asleep for the test. This wasn't too difficult as he was only a few weeks old and most babies at that age just eat, sleep and poo.
The test was called an auditory automated brainstem response or AABR screening test.The test involved placing three small sensors on Oliver's neck and head, some clicking sounds are played through soft headphones placed over his ears. It basically showed how Oliver responded to the sounds played in his ears. The audiologist was fairly secretive about the results at first which made me a little anxious...understandable I guess. After another test. I remember them saying to me that there was a problem and that they would send for a head of department. I knew then that Oliver's results were not great and I remember reading a leaflet that was given to me before I even went in for his appointment that said " one to two babies in 1,000 are born with a hearing loss of some kind." I certainly wasn't going to have a baby that was in that percentage bracket. I was wrong yet again.
The head of department and the audiologist came to chat with me, at this point I had been in the appointment for about 2 and a half hours. I went on my own with Oliver and felt quite alone and a little bit in shock as I just sat there and nodded at the right times to acknowledge I was listening. They told me Oliver had a hearing loss in both ears, but they were unsure at how much of a loss as yet. They gave me further leaflets and another appointment to explain his diagnosis and what the next steps were etc.
I can tell you that I went away from that hospital in a bit of a daze, trying to understand what had just happened. I went straight to Marks work and because I had been in there for 3 hours it was now his lunch time.We sat in the car as I explained what they had said and done. Mark was calm and quiet. Taking it in and trying to digest what the future held for our new little boy and what kind obstacles lay ahead for him.
It was not a great day and I believe that was probably one of the most challenging days in my life so far. Oliver's story gets better eventually. It's not all negative. In fact nearly 4 years down the line I can say that Oliver's experience has taught him, me and Mark so much that I felt I wanted to share it so I can post this blog to any newly diagnosed families to help them. As I would have loved to be able to read and understand another parents perspective. I hope you enjoy Oliver's story.

Thursday 17 June 2010

Day 1as a blogger!

The night is definatley drawing to a close so day 1 is very short and sweet. I will look forward to writing my brand new entry tomorrow. x