Category Archives: Mapping

Words are just noise

xray

The life of a CI kid’s family appears to me to still be a roller coaster of emotions. It has now been 20 months that Harry has been hearing and we have survived a winter without incident. 
The latest appointment with our ENT was no more than 4 mins long and we left with a huge smile, as internally everything appeared to be perfect. We made a comment to our surgeon that Harry was starting to get fussy about putting his ears on in the morning but once on he was fine. Our ENT remarked that we should just do what we needed to get them on and not to be concerned that we had resorted to bribery through use of TV or I Pad to assist us.

It was almost as if the last 4-5 months of normality was cursed by throwing in a Specialist appointment, as that following week Harry got progressively more annoyed with his ears to the point where at school it was taking them over half an hour and three teachers to get them back on after his afternoon rest.

I put in a call to the Cochlear Implant Clinic and they scheduled some immediate Mapping for Harry (checking the sound levels and electrode functions by computer). It is a hard call to know whether the issue is a sudden shift in behaviour or a technical glitch. Sometimes a mother’s instinct just doesn’t kick in and I was at a loss as to why this was happening.  Harry was not a kid that got annoyed by his ears. He had always been extremely compliant.  Checking the Mapping would allow me to rule out a fault in the sound levels and focus on his behaviour if that was the issue.

It turned out that Harry had developed sensitivity to some high frequency sounds on his left side. He was getting agitated by the high volume he was accessing these sounds just on that side. The session at the CIC aimed at reducing the sound levels right down on the left to a place he was comfortable with at this point. Before we arrived at this conclusion we went through the stress of taking Harry for an X-ray to make sure none of his recent falls had dislodged the electrodes internally. Dan and I had become somewhat complacent about Harry falling on his head. His “balance challenges” mean he falls a hell of a lot and his threshold to pain seems to be extremely high. We just pick him up and brush him off these days and move on with the next activity. But in actual fact some of those falls could result in damage to the internal components and our lesson here was to perhaps pay more attention to changes after each falling incident that results in his head colliding with the ground! 
It was extremely fortunate in this instance the X-ray proved to be clear and there was no issue with the internal pieces. Thank goodness, as the outcome would have been more surgery. So the Clinic set about changing his levels to make it more tolerable for him.

Of course I tried to find out why this had happened. Is it not possible we can go through a year without hiccups and incidents? Does there always have to be a drama? I am sure for many parents when their child decides not to put the CI’s on for a day they just resign themselves to it and try again the next day. For some reason his defiance makes my blood boil and I see red. Thinking of everything we go through as a family to give him sounds I can’t bear to be defeated. So when the headband is hanging on a door handle and is not on his head it creates a drama in my mind! Given my reaction to his world of silence, I was determined to get the audiologist to give me a scientific reason for this need to change his sound levels. But, they couldn’t.

There are so many unknowns with the toddlers. Thinking about how much physical change goes on with them to grow and become people, is it any wonder that occasionally there is a need to adjust their volumes? Of course it doesn’t affect all of them, but for some reason unknown to us all, Harry now is only able to tolerate 40% less volume on his left side for the high frequency sounds.  The left side is coincidentally the site of the infection from last year- and no-one can say if that is linked or coincidence. Mastoiditis (the infection he had) is rarer than being profoundly deaf.  One needs to be pragmatic and focus on the fact that this change in sound levels shouldn’t really matter. 7 or 8 years ago newly implanted kids were only ever given one implant and managed to learn to speak and listen perfectly well. He’ll be right Mate.

pitch in the cochlea

Overall I can pick up that in the last few weeks of this lower sound level there has been a decrease in the accuracy of Harry’s speech. Some of his regular words are starting to sound the same. I can’t tell the difference between “Bubbles” and “thank you” but his listening is still on track and I can tell he understands everything fine.  It also hasn’t stopped him repeating new words, which is the huge stepping-stone to language he is accessing right now. He has started to use words to get what he needs. Utilising verbs such as “Help” and “fix” in his play routines means he can verbalise what he would like to achieve. Spontaneously saying “Thank you” when he is given something makes me go all warm and fuzzy inside. His latest leap has been when you ask him to choose between two activities without any visual clues he is clearly repeating the activity he wants to undertake.

Given all this progress my primary question to the Audiologists had to be whether it would go back to the same level it was at in July.

Their response to my question was simply that Harry would slowly start to build a tolerance to the high-pitched sounds and therefore allow an increase in volume over time. If not, the brain will learn to interpret speech at that volume.

I guess either way he will get there in the end.

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Filed under cochlear implants for kids, Deafness, Hearing impairment, listening skills, Mapping

Progress after 9 months

I haven’t written much about Harry’s speech progress in a while. Looking back on my posts there is a lot about keeping the CI’s on with various accessory adaptations but I seem to have subconsciously steered clear of discussing his hearing progress since the infection.

There is a reason for this.
It was not until the end of October that Harry was given the complete all clear from the hospital and we could say that the intravenous antibiotics had worked to save his left implant. The infection was gone and Mapping showed it had not damaged either implant- you can’t even imagine what a relief this was for us. I guess I was waiting for the thumbs up before I wrote about it.

In the last few weeks we have returned to the Cochlear Implant Clinic for sound level reviews. After Harry’s infection the mapping had returned to pre- infection sound levels and we thought this meant the whole incident had not made an impact on his progress.

But 2 months down the road it dawned upon me in a session at Tarayle that Harry had not made any steps forward with his speech since the first weeks of mapping back in October when he said banana and Alice.

Sometimes the progress when it is not a full word is so subtle it takes a third party to point out to me that he has a new sound or word. Often this is the role of Judy our case worker at Taralye. It wasn’t until I started to discuss with Judy what Harry was doing compared to other kids with a similar hearing age, that it became obvious to me he was no longer mimicking my words in our one-on-one sessions at home.

What prompted me was a play date last month with another Taralye child who had been given her implants one month before Harry and was one month older than him. It was so interesting to see the difference between them. When I pointed to a book she repeated first go ” book” so clearly back to me and was able to do this with quite a few words.

Harry has never repeated words immediately – his process takes much longer and requires a lot of repetition of a word before he tries to speak it. I was inspired that after 10 mnths this little girl was speaking so clearly. But it also made me realise that Harry had stopped even trying to copy my sounds.

My immediate response once I had highlighted this issue was to check with the Cochlear Implant Clinic whether there was an issue with the program or Mapping. They rearranged my next appointment to bring it forward to 2 days later so we could check. They are so efficient to ensure the patients are not left without sound for any length of time.

In my mind I was hoping that there was a technical issue because if all the sound levels were okay then what could be the cause of the change in his speech?

It turns out that he was not picking up high frequency sounds in his left ear- which is the one the infection spread through to the electrode. High frequency sounds are the “softer” speech sounds such as “shh” and s sounds. An explanation for this is possibly some remaining inflammation around the left electrode from the infection- but I felt this was more a guess than a fact, as there is no way for the Audiologists to check for this and so few patients get an infection that travels as far into the implant as Harry’s did.

His left Implant levels were tweaked and he was given 4 programs to work through over a week when we were to return.
It didn’t take long for Harry to move along these new sound levels and throughout the week I was scrutinizing his chatter . It certainly increased post clinic visit but I couldn’t detect any new words or babble- just more frequency chatter which was still a great improvement.

On our return visit the levels evened out on both sides so the left side was detecting high frequency sounds better than a week ago. I am not an Audiologist- although some days i think it would help if I had some training in this field. So my understanding of what goes on once the electrodes stimulate the Auditory Nerve is very basic.
I have been told that once the brain is given the information by the Auditory Nerve that there is sound , there are still a lot of steps to then allow the receiver to be able to create speech . Maybe it is just that Harry’s brain is still creating those pathways after recovering from such a massive infection.
What I do know though, and I always take time to remind myself, is that I have never met a CI recipient who doesn’t learn how to speak well , so it will be just a matter of time.

I know I have some Readers out there who know more than I on how the brain interacts with the information given to it by the CI and are further down the track than us . So I invite you to share your knowledge with us.

After all it is a Blog and what is a Blog without commentary ??

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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.

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