Tuesday, 4 January 2011

Better late than never!

Well tomorrow turned out to be 4 months later. I guess I just had other things to keep me occupied. Christmas has come and gone and the new year is here. I haven't really made an new years resolutions because they never seem to work for me. We have set family goals and I have set a goal of my own for April this year to do a half marathon in aid of the NDCS.
I have just read my last entry for Oliver's progress with his hearing aids and realised I haven't really got very far. So here goes I'm going to try and get somewhere today.
I am at the point of solving problems we had when Oliver got his hearing aids. Once fitting was sorted and him actually keeping them in was solved we had to work on listening. This was harder than you may think. When Oliver was diagnosed it was strange how we adapted to being a family that hardly ever spoke to Oliver. Cruel it may sound but in our heads automatically we stopped the baby talk and chatting to him. It was going to be hard to break the mold. In supermarkets I would listen to mums talking to their babies and try it out. The first few times it actually felt strange. No idea why but it did. Oliver was quite a nosey baby. He wanted to know what was going on around him and who was around. When I held him most of the time I made sure if we were in a crowded room he would be facing outwards so he could see everyone and see what people were doing. He was more content in these positions. Little did we know then that he couldn't really hear much with his aids on, so that's why he wanted to be facing the world around him to see what was going on.
We would regularly visit the Hearing clinic at he hospital to have his molds done so he wouldn't outgrow them. This was once every two weeks. Quite intense really. I would say a lot of his baby life was spent in hospitals. He seemed to get used to the process though and was very cooperative when it came to taking new mold impression. The process went something like this. The audiologist would take his hearing aids off. Check his ear with an otoscope to make sure there was no wax blocking the ear canal then push in a tiny ball of cotton wool with a string attached to the end into his ear, called an otoblock. This prevented any of the impression material entering the canal or touching the ear drum, usually done with a small probe with a light attached to the end. The impression material was then syringed into the ear and pressed down to make a good mold and left for 5-10 minutes. Oliver was fantastic with leaving it where it was and not touching his ear. Very brave really. The impression material was then removed with the otoblock attached to the end of the mold. Job done a great impression of the inner ear for his hearing aids to fit properly. Sometimes the audiologist would have to do it twice if Oliver wriggled when she was putting the impression material in his ear. Must have felt weird really. This went on till he was about 2. Lots of parking money spent at the hospital car parks now i think about it. It's not cheap either.
As the time went on while wearing his hearing aids we could tell he wasn't hearing a lot because he wasn't listening to us. In the meantime we were still having regular visits from his teacher of the deaf. She was encouraging us to continue talking to him and playing noisy games etc. Rosemary his teacher of the deaf and I had a little joke about one day he would say "quack quack" back to us as we always played games with ducks. I couldn't see past the here and now really and couldn't imagine that, let alone what he is accomplishing now in his speech vocabulary.

Thursday, 2 September 2010

A lot of firsts!!

I had to skip forward about 2 years I'm afraid to today. I will continue his deaf journey very soon I promise. I have to share how I'm feeling about Oliver starting school tomorrow. I guess it just hit me today. When your getting the necessary school uniform, new shoes, plimsoll's, bag, lunchbox etc etc you just do it without realising that your little baby has actually got to that age already. I am sure most mums will agree that the time goes unbelievable too fast. It feels like only 2 years ago that we brought him home for the first time. The little dot he was...(yes it's true he was once tiny only 6lb 9oz) I remember thinking about school and that it would be a lifetime away and that we had sooo much time to spend together.
I am fairly sad about the whole thing to be perfectly honest. I won't have him at home making noise and playing with his many cars and asking for food every 10 minutes of the day. I won't have to plan outings to the park during the day to make sure he gets enough fresh air or making sure he gets enough speech practice with games we had been reccommended to play together. It's the whole together that I will miss. Tomorrow when he has his uniform on will be wonderful because he has come such a long way on his life's journey so far. He has got to this point that I felt would never arrive. He is speaking in 3-4 words sentences, he reads numbers up to 20. He can now understand the counting sequence. He is close to learning the alphabet and just 2 years 3 months ago he couldn't even say Mama. I'm amazed and feel truly blessed for having Oliver in our lives and I'm glad we have had the experience we have, even though it's been really tough at times. This is just another chapter in his life and it just feels like he is accomplishing far more than i ever expected. He amazes me with his positive attitude and happy nature and confidence with life in general. I will write in tomorrow and tell about his first day at primary school.
He also has his first swimming lesson this evening. We wanted to make sure he was confident in the water especially as he can't wear his processors in the water. There is a lot of actions and animation in his lessons apparently so he can basically copy what he has to do and lip read a little. I'm excited for him. He may even turn out to be a super duper swimmer. Until tomorrow!!!

Friday, 6 August 2010

New Challenges

It's been a while since my last post. I`m not at home at the moment, I am in Switzerland on holiday. Enjoying day tripping to different places. We decided to drive here as well. We must be insane...right? well it was an experience. We have the journey home to do yet. Oliver has been okay on the journey here really. A few grumps and tantrums but understandable for a 4 year old kept in a car for hours.
Moving on to the next part of Oliver`s blog. He was given the over the ear hearing aids round Oct/Nov time in 2005. We decided that it would be a great idea to get him a Bumbo...those of you who have children know exactly what I`m talking about. Those of you reading this and are not sure if I have misspelt Bambi or not. Well it`s like a chair for babies who can hold their heads up but can`t quite sit up yet. An amazing invention if you ask me. Well he got one a little early from his aunty Cas for Christmas so he could sit in it with his hearing aids on. Genius! The most annoying part to the over the ear hearing aids was that they would flat around and whistle a lot. For example we would be sat in church in sacrament meeting and you would hear this high pitch whistle and everyone would be looking around and wondering what the noise was, thinking it was the PA system, when in fact it was just Ollie`s hearing aids. They would whistle becasue it meant there was a gap between the molds and the ear and the sound would escape through the gap creating the whistle.
The beauty of having a problem sometimes is when someone finds a solution for it. There is in most cases positives that come from negatives. Our wonderful teacher of the deaf Recommended a cream called Otoform cream. You would have to apply it to the mold each time you put his hearing aids in. It is a little bit tacky so it worked beautifully to seal the gap. So there is my postive from the negative. The same applied to the flapping around of the actual aid itself. As children have quite small ears a hearing aid does not fit beautifully behind the ear so again our teacher of the deaf introduced us to boob tape...no not for me!!!! for the actual aid. We would cut a tiny stip off and stick it to the back of the aid and because boob tape is basically double sided tape. We stuck it to his head...problem solved. Poor boy..no wonder he wanted to flick them out of his ears. He did that for quite a while and he would just flick them out and leave them on the floor or his toy box etc, so I would have a treasure hunt on my hands. Or in the super market he would flick them out on the floor. Just to go off on a tangent. I once had a lady in the super market ask me " What is your baby wearing in his ears...is he listening to music?" oh sure lady I always make my 6 month old wear head phones to the super market. Bless. It made me laugh.
Logging off now...I have the bedtime routine to do...involving dragging him away from the PS3 that Daddy and him are playing. Wish me look. I will write when I can maybe after my hols in a week or so.

Friday, 2 July 2010

Well when I spoke about plenty of appointments for Oliver to attend, I guess we didn't expect there to be so many.
We attended further appointments to test Oliver's hearing. In the best way they could when he was still very much a new baby. I was comforted by their professional manner and the fact they wanted to make us feel at ease about the whole situation. They were not accustomed to dealing with a newborn deaf child as Oliver was the first baby that was picked up on the new born screening in Northampton. They started the newborn screening in September 2005. When the baby is born they aim to test the babies hearing within a few weeks. It has it's advantages obviously one being you pick up their deafness immediately and aim to help that child as fast as possible so they can hear in a way that would be normal to them. Whether it be hearing aids, Cochlear Implants or whatever is available. It also helps to improve their outcome through speech as quick as possible enabling them to talk faster than what they would have normally done if diagnosed later in their life. The disadvantages which seemed to affect me and possibly Mark were that many hearing parents go through a grieving process upon finding out their child is deaf, which I think we both did. Wondering how your child will ever communicate with you, wondering if they will ever hear anything you say, wondering if they will ever say your name, wondering how you and your child will ever cope with this unexpected turn of life, and innumerable other questions, We had all these questions and more. We wanted to enjoy our baby without having to worry about what appointments we had to get to, will he have hearing aids? or how will we aim to help him to cope with life's challenges with a disability.
Man it all sounds so hard now I write about it in black and white. You know when people ask you how did you manage...the answer is, you have to. Oliver was adorable (of course he still is) he was our life now and I would have done anything for him. I was also very intrigued about what new information we would learn next. That kind of leads me nicely on to his first hearing aids.... Well they were awful. Not too positive I know, if i had a picture of one I would put it up here. In fact I will try to find one. The ear molds themselves were made from heavy plastic. and attached to the plastic mold was a wire about 15Cm's and on the end of that wire was his over the ear part of a normal hearing aid. This made the device quite heavy, so when Oliver was laid down that was when we used it the most because it was too heavy and awkward to use otherwise. You imagine trying to feed a baby that is wriggly anyway and hold and play with a baby with this hearing aid in, Very hard. On the up side I think we dealt with this quite well. I would set aside probably only an hour a day for him to wear them and he would be laying down. This was precious mummy, Oliver time that I got to coo and arr over him. Giving him lots of attention and making lots of funny noises. I was told this would a) help our bond b) help him capture sounds and watch my mouth patterns and c) help him recognize my facial expressions as he wouldn't be hearing everything I said to him. At this point in his development he was not hearing a whole lot really. He may have heard low pitch sounds more than high pitch.
It all seems so long ago. The end of the wire hearing aids didn't last long though. At 3 months I remember going into hospital for one of our routine appointments and pleading with them to give Oliver over the ear hearing aids. The main reason they never did this when he was younger was because if the molds don't fit properly they tend to whistle and with a new baby they lay down quite a lot so the aids would be knocked out occasionally. Oliver being Oliver he is quite a physical active little chap and was then as well. He wasn't laying down as much at 3 months so they agreed to give him the over the ear hearing aids. We were really happy about it. They looked neater. He could wear them sitting up and they were digital ones so he could hear more sounds. Life was looking up until There came new challenges with the over the ear hearing aids....

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