Happy Little Girl

Well it's been a while...

It is now 6 months since Isobel has been wearing her hearing aids and we have noticed so many changes in her. The picture says it all, we have one seriously happy little girl. These days she is all smiles, hugs and kisses, and... in training to be a princess. What 4 year old little girl isn't?

Looking back, it has been a challenging 6 months, we have experienced just about every emotion a parent can. We have had some really tough times, but they have really been outweighed by the tremendous highs we have experienced.

Our daughter has really gone from an angry, screamy, 'don't touch me!' girl, to the playful silly little thing you see in the photos. She plays and interacts with many  children, she advocates for them and comforts them when they are hurt or sad. She helps with jobs at home and routines with her little sister. She sits still and plays hairdressers with a little girl from Pre-School. She is constantly singing or chattering sharing her books, her paintings and her toys. It is easy to say she is a completely different child.

We have also experienced such an outpouring of love and support from the community we live and work with (our family away from home). Without that, and the constant love and support from our (blood) family we would never have come as far as we have. We are truly lucky to have so many wonderful people in our lives.

And so as we close the chapter on the first 6 months of the journey of raising a child with hearing loss, we embark on the next 6 months.

These will bring our greatest challenges yet. Isobel will have her cochlear implantation surgery and will have to re-learn how she hears sounds. Sounds will be very different for her and we essentially start from the beginning with her AVT. The good news is, she will move through the steps even faster than she did with the hearing aids.

We hope that she will continue to be the happy little girl we see today throughout all the challenges to come in this next chapter.

Conclusions and Achieving Goals

It's been a few weeks since my last blog and we have been busy, busy! AVT, hearing aid adjustments, more hearing tests, discussions, and a visit from Nana and Grandpops, all the way from England.

Isobel is doing brilliantly, she is jabbering away pretty much constantly, it's funny how we find ourselves having to ask her to be quiet!

Who would have thought it?

The adjustment to the hearing aid has helped with the lower frequency sounds and she is beginning to correct words when she hears them repeated correctly.
Unfortunately, it has had an affect on her high frequency hearing, this has dropped off a little.

Now we know for certain that we have reached the limitations of the hearing aids. We are all in agreement. Isobel will have to have surgery and have a cochlear implant fitted. She will only be getting the right side fitted and she will continue to wear a hearing aid on her left side.

Her Cochlear implantation surgery is scheduled for August, about a week after we return from our Summer vacation in England.

It has been great to have had the time to explore all the options before coming to this point and we're ready to move forward. The relief to all be on the same page regarding Isobel's next steps in indescribable.

We had a great AVT session over the weekend and we got to reflect on the goals that Isobel was set in January. It was so good to be ticking off things that she can do and say, looking at the sheet, it was incredible to see how much she has achieved in such a small amount of time. Here is the first half of the goals, we'll look at the other half during our next session.

It is so nice to be able to chat with her and have her understand most of what we are saying. Mostly, it is lovely to hear her chatting away to Molly (doll formerly known as Special Ears), singing songs and sharing books with any-one willing to listen.

Are you sitting comfortably?

Between a rock...

Have you ever been in one of those situations where one person tells you one thing and another person tells you another? Well, that is where we are. Stuck between a rock and a hard place.

In my previous post, I touched upon the frustrations Isobel has been experiencing, due to the mouth covering and the soft sounds she struggles to hear. Our sessions have improved greatly as I have taken a more relaxed approach to them and have built them around some kind of art and craft activity. Her response to these sessions now has been vastly improved and once again she is doing a great job.

A language sample done last week puts her Mean Language Utterance (MLU) at 2.08 words. That is, in free expressive speech the average length of phrase Isobel uses is 2.08. This is on par for a 2 year old, which when you think Isobel has a hearing age of around 4 months is pretty good.

Isobel's school report card came out today and it was... brilliant! There were of course areas for improvement and her language development section was a work in progress, but, compared to her first report card, this looks like it was written for a different child. So happy!

Anyway, I digress. The rock and the hard place situation has occurred because of differing opinions from our ENT and our AV therapist and consultant Audiologist. 

In a nutshell we find ourselves at a crossroad - that is, do we go ahead with Cochlear Implantation?

We have had so many appointments, meetings and discussions in the last two weeks, we feel overwhelmed with information and making a decision couldn't be harder.

We are making strides forward though. Next week Isobel is getting her hearing aids programmed adjusted. It seems we are able to get some more gain on them, an additional 10db in the low frequency range. Hopefully this will help her to hear more of those softer, sounds and she can start to finely tune her speech. Hey we can hope...

So, we're going to see how that helps, but the ENT really does feel that the best course of action would be a cochlear implant on the right side an a hearing aid on the left. Yep, the absolute original idea that we though we might not have to do...

But, because her hearing loss is not a usual hearing loss - (good high frequency hearing and poor low frequency) she is not the typical cochlear implant case, however, with newer technology, cochlear implants can now also help with hearing loss cases just like Isobel.

But the big thing is of course, is that it is surgery. If the hearing aids give her enough to hear all the sounds so she can speak should we do it?

Decisions...

Plateau

I think we have hit a plateau. It was going to happen, things just can't keep going at break neck speed. It just isn't possible.

Isobel is continuing to progress with her AVT but the rate is slowing down. We are getting some more refined sounds, spontaneous talking and the following of instructions.It has however, got somewhat harder for Isobel now, and she is feeling the difficulties.

I can't let her see my mouth anymore when we do our little sessions together and so she can't rely on lip-reading. She is finding this most challenging and frustrating. She often pulls at my hands or whatever I am using to hide my lips. It is a coping strategy that she has been using for a long time and so it is difficult for her to break the habit of looking and to use her ears instead.

It is so difficult at times for me, I am her Mum and her teacher. The teacher inside knows that this is conditioning and we will get through it and have her use her ears. The Mum however just sees her little girl sad and angry and I feel quite guilty because I am causing it. It is a necessity though, and we must ride this storm. 

We shall keep going and hopefully, we shall get through this difficult patch and come out the other end stronger and hopefully a little bit wiser.

It wouldn’t be fun if it was too easy… right?

Push it down the stairs...

Did you ever have a slinky? I'm talking about the rainbow coloured kind, not the one that forms the body of a dog (Toy Story).

Well I happened to find one in the supermarket here and added it into the rewards that Isobel gets when she completes a task or imitates a word correctly. They are just a selection of cheap, fun toys/things that she sees as a real treat when she does well.

By far and away the slinky is her favourite. That is after she had seen how it works. The first hurdle of course was living in an apartment we have no stairs, so we had to venture out into the corridor the find the perfect platform for the slinky.

Now the reason for my long winded introduction. We have had Isobel's first 5 word phrase. 'Push it down the stairs.' It started with 'push it..., push it...' every time she tipped it off the edge of the step. Now we get some version of the whole phrase with each step the slinky is pushed down.

Slinky! Everyones favourite toy.

Chatterbox

Where has the time gone? We have had such a busy time lately!

We had Isobel's AV Therapist out to visit us here in Korea and what a week we had. Intensive! She went to school with Isobel each day and provided well received tips and advice on how to help Isobel. We had afternoon sessions that lasted around 90 minutes each day and all the bits in between in which to squeeze opportunities to model, imitate and just talk, talk, talk.

It was tiring, but so well worth it. Isobel has turned into quite a little chatterbox, she hasn't stopped talking and singing since Cheryl left. We are getting more and more words out of her and longer phrases and sentences. We are just so excited by all of this.

She is continuing to do better in school, joining in on some of the class songs and 'reading' to her classmates. This involves her grabbing a random friend and sitting them on the carpet. She then chooses a book, sits on a chair and reads to them. This is story time type reading, holding out the book and pointing at the words and pictures. This continues until the friend wishes to 'escape' and play something else. At this point they are told to 'sit down', 'stop' and 'listen'!

We have really been working on her being able to say her friends names nice and clearly so she can find a non-physical way of getting their attention. By all accounts, this seems to be working and with some interpretation from her teacher, she is sharing and playing with her friends quite nicely.

Watching her play with her little sister for a brief moment this evening was lovely. They were building a tower and Isobel was able to clearly explain to Estella that the strip she wanted to attach was in fact too big because it had 4 sections. What she really needed was a 2 sectioned piece:


Isobel:  No Estella, too big
            See, four
Estella: Four
Isobel:  This one, two
Estella: Two, OK

And the tower was built! Isobel is getting quite good at helping her little sister out.

Wonderful Technology

I was looking through posts on the Facebook group Parents of Children with Hearing Loss and somebody had posted this video. It is a wonderful video about nine different children who had cochlear implants fitted. They were all different ages when they were implanted, and had varying degrees of pre-implant hearing experience. Subsequently, they are at a different stage of their hearing life with implant use.

Even though Isobel doesn't need the implant right now, we never know what the future may hold for her. Several of these children started out with hearing aids and then needed cochlear implants when the aids couldn't help them any more.

It brought tears to my eyes to watch in amazement how articulate these children are. It was truly difficult to believe that some of them had any hearing difficulty what so ever, especially the young boy explaining all about hockey.



I am so glad that as we go through this journey with Isobel, that we are going through it now. With all the technological advancements being made in this field the future can only be bright for Isobel. She is lucky to be a 21st Century child with these solutions for her problem, what would it have been like for her 50 years ago or 100?

More importantly, I wonder what it is going to be like for her in the future...