Christmas with AVT

We had a wonderful Christmas on the Philippine island of Cebu.

Isobel got to swim every day, which of course she loved, and I got lots of practise putting in her hearing aids. I think I can get them into her ears in about 30 seconds now. Not bad!

Therapy continued everyday, 10 minutes here and there around the different things we did each day at the resort and hotel. It was lovely to have Isobel actually bring us the bag of toys to go through her Ling Six Sounds.

We did the sound tests, and even with the sounds of waterfalls in the backgrounds she was able to hear each of the sounds.

One really special moment was when Isobel started teaching Estella the different sounds. Now when Estella sees the aeroplane toys she runs around the apartment saying ahhhhhhhhh.

'Naughty Pussy Cat' is coming along. Isobel says Min-now instead of Miaow, but she says is at the right place and likes telling off the cat.

She is also showing a lot more interest in books. It used to be a quick flick through, turning every page at top speed and move on to the next book.

Now she really enjoys the story and likes to talk about what she sees and what is happening.

Another new development is that she has started to sing. Just a few little words, a Korean song about the 3 bears that Halmonie is teaching Estella. She never really did this before, the actions, but never the words. But now, she has started to develop a real singing voice.

We have had such a great time, the four of us together. There have been lots of new words and phrases, and today we got a four word sentence. We are rapidly running out of wall to list Isobel's words. Each day we get excited when she says or hears something new, and there is such joy on her face when she realises she has done something new.

As we look towards a new year and what will be a very 'big' year for us and we cannot help but be filled with hope for all that will come in 2012. Whilst in Cebu City, the hotel had what is called a Tree of hope. You pay your money (which goes to a local children's charity) and add a tree ornament with a message of hope for the future. Of course, we couldn't resist...

Routine

Anyone with children knows how important routine is, napping at the right time is essential as are providing a variety of activities that are both fun and stimulating. Both parents and children love it.

Our day-to-day routine has changed dramatically over the last 12 days. Yes 12. Isobel has a hearing age of 12 days.

Each day starts of course the with putting Isobel's hearing aids in and at the end of the day taking them out and cleaning them. (I had no idea that so much ear wax could be collected in a day!)

Each day now also has 'sound sessions' built into them. We're working on those Ling Six Sounds.

The monkey represents Ee and then we have Ah (aeroplane), Mm (bowl and spoon) and Oo (train).

Followed by Ss (snake) and Sh (baby).

We play many variations of games involving these sounds and objects. They have become part of our essential box of toys.

It is really great to hear Isobel repeat the sounds and then add her own twist to them. The sssssssnake, for instance, must slither after a particular person, and the ee ee ee monky must jiggle from side to side.

We also continue with  the hearing test game and we have a song about a 'Naught Pussy Cat', who is very fat, with butter on his whiskers. Part of this song is to meow at the right time. I must confess, the first time Isobel was less than impressed by this activity, but now she quite likes it, especially when I draw whiskers on Daddy's face with my eye-liner.

Each activity lasts for about 10 minutes, but when done everyday, we start to chip away at that big rock...

We also have numerous charts and lists that are occupying the fridge door and kitchen walls. This is the progressing list of words that Isobel is able to say, we also have charts to note her hearing test sound abilities and the schedule for her day.

Each little bit we do each day is really paying off, for all the noncooperation there are real gems. I got a real lump in my throat this week when Isobel said, Mama, love you so much!






It doesn't get any better than that!

Auditory Verbal Therapy

What is Auditory Verbal Therapy (AVT)?
Auditory Verbal Therapy is an individualised, auditory, developmental programme, implemented by us, Isobel's parents in close collaboration with a therapist. The goal Isobel is for her to achieve age appropriate spoken language, and full social participation throughout childhood and beyond.

Auditory-Verbal practice is a parent centered approach to help children like Isobel to learn to talk through listening.

AVT focuses on the use of sound (audition) for learning and gaining meaning from the environment. We as the parents, are at the centre of this approach and have to take a full and active part in every session with the AV therapist. That means that, we actually become Isobel's therapists. Our weekly sessions on Skype are to hopefully help us to learn how to provide the most productive and positive experiences to stimulate Isobel's verbal communication and to check up on her progess.

This approach is distinctive in the way it maximises the child's use of hearing as the primary sense for developing spoken language rather than visual clues.

Our AVT Session

We had our first session today and Isobel did well showing her therapist how she can do the Listening Test Game. We had a good chat with our therapist and Isobel's hearing is coming along well and she is definately hearing a lot of new sounds and developing new language already.

We have new homework, moving on from the basic hearing game to using the Ling Six sounds that I mentioned in a previous post. We have losts of new games to play using lots of different sounds encouraging Isobel to join in, but giving her time to say the sounds spontaneously.

And so we are embarking on the next step of our journey, we will become adept at mmm, oooooo, aaaahhh,  eeeeee, shshshshsh and sssssssss (Ling Six sounds). We will sing songs, ring the door bell and knock on doors all in the effort of helping Isobel's hearing and speaking.

Learning Vertical

What a morning! It has been the most stressful morning to date. I just couldn't get Isobel's hearing aids in. The more I tried, the more I got stressed. The more I got stressed, the more they wouldn't go in. Time was ticking away and we were all at risk of being late for school. And, of course, that didn't help the stress levels.

I kept looking at them, and looking at them and they just didn't look right. Also, we had been having trouble with the right one giving a lot of feedback. Even when it was in her ear. I just couldn't figure it out. I was in such a pickle, that in the end I had to put them down and take a minute.

Once my composure had returned, I looked at them again. I held the mould up against Isobel's ear and realised it was a different shape. What an idiot! I had swapped the moulds over after Isobel had taken them apart the day of the concert. The poor kid had spent a whole day with squeaky, uncomfortable 'special ears' because mummy messed up.

Once switched back, I was able to insert them no problem and the squeaking stopped immediately.

Isobel was very happy and skipped off to school. I felt stupid and guilty and trudged off to school.

This is no learning curve, this is a learning vertical!

Stage Fright

It was Isobel's Christmas concert today, from the look of it, they have been rehearsing for weeks. I had stage fright for her, not knowing just how she might re-act to a full audience, bright lights and the piano with her hearing aids. She of course handled is marvellously.

Understandably, she didn't sing much, but boy did she know the actions, when to ring the bell, and which bell was coming next.

You could definitely tell she was enjoying herself, particularly when she lead the Pre-School on a revolt from formation and had them all dancing at the front.

This really got me thinking about just how observant she has been, and how much she has picked up, despite being hard of hearing.

I imagine some of the rehearsals and learning of songs must have been really frustrating for her. I'm sure it would have been a lot worse if she didn't have the actions to go with the songs.
So huge thanks to her music teacher Mrs. Jun for those and no doubt bags of patience.

Today I was really proud watching her on stage with a tear in my eye and a lump in my throat. Even her turning around to 'sort out' the boy behind who kept fiddling with her hair didn't dampen my spirits. She did a really great job, and here is just a snippet of the concert.

Today is also day 5 of full time wearing hearing aids and it's also the first day she pulled them out, and apart, at school. I knew it wouldn't last forever! Not too much fuss, I managed to get them sorted and she was happy to put them back in.

We are really noticing a change, she really is becoming a happy little girl, just full of smiles and giggles and 'chitter chatter'. Not all of it makes sense, but there are new words everyday and we're even starting to get little sentences.

Life is good...

Inspiration

I am spending a lot of time reading lots of websites and blogs about Deafness and hearing loss. I find a lot of the information useful and some fascinating. Today I found some that was inspiring. I was reading through the Parents of Children with Hearing Loss group on Facebook and came across this young lady.

Her name is Elizabeth, she was born deaf and had hearing aids at a young age. For whatever reason, she didn't get AVT until she was at Elementary School.

Here she sings Let It Be...




I have found this video to be a real inspiration for our journey with Isobel. It gives me great hope and encouragement that even though we're taking small steps, Isobel will be here soon.

Oh and I'm pretty sure there will come a day when Isobel will want cool blue ear moulds too!

Ballet

As you know, Isobel loves to swim and jump and generally be active. She has also found a new love. Ballet. She already has the gear, and loves to dress up in the tutu and shoes.

There are classes on campus which she has often seen, and imitated from the corridor, but she is too young to join them. Then, a couple of weeks ago,  whilst grocery shopping, we discovered an English speaking ballet class at the World Cup Stadium Educational Centre. So, continuing a fortnight of firsts, Isobel had her first ballet lesson.

We were a little nervous as to how dancing with the hearing aids would work out, especially when we were asked to leave the room. She did a great job and I managed to capture some extracts through a 'crack' in the door.

She fell asleep in the car on the way back. Teasing hearing aids out of a sleeping child is a feat, but we managed it. Upon waking, Isobel asked for her 'special ears',grabbed a glass of milk out of the fridge and went about her business.

A Fortnight of Firsts

We, as any young family, experience many firsts, but for us, the last two weeks have brought some real significant ones. Our first night away from the children at a posh hotel, first time of having friends babysit rather than our 'halmonie'. The first time of putting hearing aids into a child's ear. But the most exciting, the first day of Isobel wearing hearing aids all day, and this has lead into the first weekend of Isobel wearing them.

It has been an amazing weekend! Isobel has only pulled out her hearing aids once, the whole weekend and that was yesterday in the car on the way home from the supermarket. She even kept them in whilst at a birthday party in a kids cafe which was brilliant. Today she has hardly touched them. In fact when the behind the ear part has fallen forward today she has asked either Nick or I to fix her special ears. I am so proud.

Isobel is already saying new words and both Nick and myself have experienced a conversation with her. It was fantastic. She has been so happy and watching her play, chat and read with her little sister has brought tears to my eyes.




We did however have a big concern about losing the hearing aids. When she goes to school she will not have eagle eyed Mum and Dad checking every second that she hasn't taken them out and flushed them down the toilet. To combat this, we have bought several glasses cords. The loops that you would normally put on the arms of your glasses, we have put on the tubes of Isobel's hearing aids. Then we just pin the cord to her shirt, so they would dangle down her back should she pull them out. Today I threaded the cord through the hair band on the end of Isobel's braid, I think pinning it to her shirt might work better.

We have also begun our AVT homework. After Skyping with our Auditory-Verbal (AV) therapist on Friday we were set homework to help Isobel prepare for and understand the task when completing a hearing test. Something that she will be doing a lot of in the future. This was us playing a 'game' that will eventually simulate the hearing test.

You'll agree she's doing pretty well. We lifted the bowl up off the floor for subsequent games so she was hearing the sound rather than 'feeling' it. She seemed to get the game quite quickly and enjoy it. It's just as well really as we'll be playing it every day for a while. Once she gets really good at it we have to start varying the different sounds - I hope our neighbours won't mind too much!

Quick Guide Instructions

Day two of Isobel wearing her hearing aids. She was a little reluctant to put them in at first, but soon came around. I don't think she had much confidence in my ability of putting them in for her. I tried to explain that I would only get better if she let me practise, but she didn't seem overly impressed by that. Not to worry, she sat semi-patiently as I finally inserted them.

She likes to hear the popping sound you can make by pushing your finger on the inside of your cheek and out of your mouth. It was great to see her face as she wondered where the sound came from. She was a little disappointed however, when she couldn't make the same 'pop' though!

Story Time.

We did get a couple of 'Special ears off!' today, and a few little tugs on the tubes. But once Daddy started reading some books, it was all forgotten and everybody got immersed in the story.

Instructions for Inserting Hearing Aids

There really is a bit of a knack to getting hearing aids in. Here is the 'Quick Guide' Instructions. Of course it doesn't help that they are written in Korean. However, in this case, the diagrams do actually help.

Also you have to listen carefully as you put them in. Until they are in absolutely correctly, they make a kind of squeaking sound. I find that I have to  put my ear right next to hers to listen to the device, to make sure there is no sound coming out. At this point it is the only way I can tell if they're in properly. 

If Isobel fiddles or pulls them out a bit, the squeaking sound returns until they are once again fitted properly. I'm hopeful that this sound will soon discourage her from fiddling with them too much, but hope it isn't too uncomfortable.

We didn't manage our 2 hours today because of swimming, but she did manage a very good 65 minutes or so. Still pretty good going, seeing how new these little devices are to her.

Engrossed in the story

My mantra for the moment it the old favourite 'One day at a time.'

Until tomorrow...

Hearing Aids

Isobel's Hearing Aids

We took Isobel to get her Hearing Aids today. The weather was awful, pouring with rain, but we managed to get to the appointment not too wet.

And here they are. The one on the left (the darker coloured one) goes in her right ear. This is on loan from the hospital until it is replaced with the cochlear implant in February. The one on the right, goes in her left ear and is owned by us.

As you can see, the moulds turned out well from the impressions last week.


I'm not sure what I was expecting when the hearing aids were put on, but there was a serious amount of ear pulling, poking and pushing. An experience that I can't imagine I would have liked myself.

Check it out for yourself:

Hearing Aids and Equipment

Hearing aids come with quite a bit of equipment. There is a cleaning kit (per unit), 6 months worth of batteries, travel case and night time drying kit.


When they are not being worn, we need to make sure they are open with the batteries out, to conserve them. That way they might just last 15 days!

Hearing aids with the batteries out

Drying Kit

Then at night, we have to put them in this container that is filled with de-humidifying balls. The cool thing about these is they change from blue to pink when they are filled with water. 1 minute in the microwave and they change back to blue, ready to de-humidify again.

We have to start slowly with the wearing of the hearing aids. 1 hour today, 2 hours tomorrow, 3 hours on Saturday, building up to 8 hours. She also isn't to wear the hearing aids outside of the house for two weeks.

She wore them for an hour this evening and did a great job, after the initial 'getting them in' which Mummy clearly needs to practise, she hardly touched them at all. She was fantastic! And the beam on her face when she heard Estella say "Thank you Isobel" was precious.

I am so proud of my big girl with her 'special ears'! It was a truly special day.

Isobel 'Special Ears' Corben

Speech Banana

I came across this diagram, it is a really good example for explaining the hearing levels of different sounds.

Isobel's levels are 80 in her left ear and 85 in her right ear. So looking here, there really are a lots of things that she really doesn't hear very clearly.

This version, makes it all seem more realistic, rather than a series of numbers.

In the middle of the audiogram there is a part called the “Speech Banana.” Most of the sounds of speech fall into that range of pitches and loudness. 

Our goal for Isobel is for her to be able to hear in or above the Speech Banana with her hearing aid and cochlear implant, that way giving her access to the sounds of speech. 

In the speech banana, are the sounds a, u, i, sh, s, m, these are called the Ling Six Sounds. These sounds span the length of the Speech Banana. 

When Isobel (hopefully) responds (through a behavioural response or imitation) to a Ling Six Sound Check, we can be reasonably sure that she has access to all of the sounds of speech. Having access to all the sounds of speech means she will be able to develop her own speech.

D-Day

Exciting and nerve-racking! The date has been set for Isobel's cochlear implant surgery. 7th February. It is amazing how far we have come in such a small amount of time. She has lots of tests to go through, blood, urine, MRI and another hearing test, all to take place mid January. The most important test is to make sure she actually has a cochlea nerve. There is a less than 1% chance that she doesn't have it, but her doctor just wants to be sure. Without the nerve, the implant won't work. So I guess it's better to be safe then sorry!

The following animation and diagram explain what a cochlear implant is and how it works.

Once Isobel has had the internal processor and electrodes implanted, she won't immediately hear. We will have to wait until her scar has completely healed before it gets activated. This will take about 4 weeks.

In the meantime, she will wear hearing aids on both ears. We'll be collecting those on Wednesday. We're excitied to see what her reaction will be to hearing all the sounds around her.

Ear Impressions

Today we took Isobel to have impressions taken of her ears so the moulds can be made for the hearing aids.



This consisted of having a small piece of cotton, with tails inserted into her ear, followed by a large squidgy syringe full of silicon.

She did a fabulous job, not too much wiggling. And the result? A set of turquoise ear impressions.

We go back next week to get the hearing aids.

Special Ears

It took me some time, lots of searching and patience, but I found a doll that wears hearing aids. I actually got it here in Korea, but it was through he US company Lakeshore Learning. Here she is;

Isobel was thrilled when she saw her and loves to show everyone she sees the 'special ears' that her doll has. She even refers to the doll as Special Ears, I know, not a conventional name for a doll, but we're going with it for now.

We have great hopes that this will ease the way into Isobel wearing her own hearing aids. She can see what they (kind of) look like, and she will have someone who will have the same special ears that she will have soon.

I just have to figure out how to turn the right hearing aid into a cochlear implant when it's time for her surgery...

Isobel

This is Isobel.

She is almost 4 years old, she was born, and lives in Seoul,  Korea. Isobel loves to swim, collage, paint, read and jump on the trampoline. 

She also has severe Sensorineural hearing loss. This is when the inner ear nerves become damaged and do not properly transmit their signals to the brain.

She was not born deaf, this is something that has developed in the last 2 years. It was discovered when we realised her language skills weren't matching up to what they should be at her age. She can talk, but she doesn't talk in sentences and her pronunciation of words isn't quite right.

So, we find ourselves at the beginning of a journey to help Isobel to hear and develop her spoken language. To do this she will wear hearing aids for 2 months whilst all the testing is done for her to have surgery. She will be getting a cochlear implant on the left ear and will continue to wear a hearing aid on the right ear. The reason for this is that the implant produces a digital sound and the hearing aid provides a more natural sound. The idea being that Isobel will get the best of both worlds. The doctor was able to tell us that because Isobel was not born deaf, but this is a situation where her hearing has deteriorated the prognosis was for a higher success rate after the procedure.

The hearing aids and cochlear implant, are only half the story. In order for her to really talk properly, she needs auditory verbal therapy. This is very different to speech therapy. Without this the surgery is useless, she needs to learn to hear. The trouble is, all the therapists in Korea, speak Korean, as they should. However, we have been in contact with an Auditory Verbal consultant who has told me of a couple of organisations in Australia that offer the therapy via skype/video conferencing with the additional possibility of visits to their facilities, or therapists visiting us a couple of times a year. Australia is the leading country for this type of therapy and luckily in the same time zone as Korea!

So, task number 1, get impressions of her ears so the moulds for her hearing aids can be made...