Hunting for Bears

Isobel is adapting to her cochlear implant beautifully. All the experts seem to be pretty impressed with how she's coping, what she can her and her responses to sounds.

We are striving forward with therapy in one respect, but have gone backwards in others. About 15 minutes a day, Isobel works without her hearing aid and just uses the implant.

We have gone back to our Ling 6 sounds and training her brain to hear them and distinguish between them. She is doing pretty well at it. She also has to distinguish between different songs that we've done from the beginning. She's also doing pretty well at that too.
She is back to not liking me to cover my mouth, as she is trying to cheat a bit while her brain get used to the new sounds and deciphering them. Knowing we have paced through this phase before gives me confidence to know that we'll get through it again.


Our current book for therapy is Michael Rosen's 'We're Going on a Bear Hunt'. It is full of lots of repetitive language, which is very good for listening to and echoing. Both girls are very much enjoying the book and get very drawn into it. It is so lovely to see Isobel getting so excited by stories and books.

 

 

We ended the evening by going on a bear hunt out the back of our apartment building. It was getting dark, so we took our torches and set of through the small wooded area looking for a bear. We used all the words we could remember as we trekked through our story.

 

Sadly, we didn't find a bear, but we did come across a big Apa instead!



Switched On

Isobel's scar is healing up nicely and yesterday, we were back at the hospital for our switch on.

I have to confess to being somewhat disappointed with the actual 'switch on'! After watching so many wonderful life changing moments on You tube, I think I may have built up the moment to be greater than it could ever be.

Realistically, it was never going to be an 'eureka moment'. Isobel isn't going from silence to perfect hearing and understanding. She's going from Some hearing and understanding to noise and confusion.

However, in the doctors office yesterday there was no real reaction to the device. The Audiologist showed us graphs so we could see that neurologically, it was working.

After going through 40 minutes of instruction of how to use the device, clean it and put together the variations of processor and battery pack combinations, we finally went home.

After the children had gone to bed, Nick and I went through our briefcase paraphernalia. So much stuff to go through and make sure that we know how it works and how to get it to stay on Isobel's ear. Finally, we went to bed wondering if yet again we had done the right thing.

So much stuff behind her ear

This morning was eventful, trying to get everything to balance and fit behind Isobel's ear. The conventional battery pack behind her ear is too big and fights against the coil and magnet causing her ear to really stick out.

In the end I opted for the child battery pack connected to the processor  a wire. I managed to get it to stay behind her ear by by sewing the ear gear sleeve to the headband that Isobel wears to hold her hearing aid on.

My CI Processor holder (patent pending - ha)

All was balanced and I switched the power on.

Isobel immediately burst into tears crying, "too much shout, too much squeak. EEEEEEE!"

A reaction! I was so relieved, concerned of course because she was crying, but thrilled to see a reaction to it. I managed to turn down the volume using the remote control and quickly she calmed down and was happy.

The walk to school was very different this morning. "ssshhh Mummy"

Later today she was playing with the sounds her voice makes, it's quite funny to listen to. She has also continued to be her chatty self, and as the day has gone on she has returned to the little girl full of smiles.

I guess, in the end, we got our 'eureka moment' after all.

Inside and Out

Here is Isobel's implant. This is a copy of the x-ray that she had immediately after her surgery last Tuesday.

Here is a close up of the implant section, how cool is it?

You can clearly see the electrodes coiling around the inside of her cochlea and the device implanted just under the skin above her ear. 

I find this image truly amazing, this tiny piece of technology is hopefully going to help her to hear so much better. With continued AVT it's hopefully going to help her speak more clearly and be able to communicate with others so much more effectively.

So Isobel had another big day today, she had her stitches out. Given the previous visits I was bracing myself for some serious screaming. Not the case, she was so brave and sat very still. The hardest, and most uncomfortable part for Isobel was removing the adhesive dressing. That was mostly because it was stuck to her hair, think band aid on a hairy arm multiplied by 100!

She has been given the all clear! No more dressings and back to school tomorrow. It isn't very pretty, and I'm sure there will be lots of conversation in her class about it, but, her hair will grow soon enough - in fact you can see new hair growing already. Given time the scar will also eventually fade.

As a friend of mine said to me last week, it is one more interesting chapter in the journey of her life.

The hard bit for now is stopping Isobel from touching the scar. It must be difficult, not being able to see it. She is always very interested to see the photographs we take. She looks at them, gasps and says 'big owie'.

For now it is a big owie, but it won't be for long...

Telling Friends

I am always trying to find different ways to make Isobel's journey a little smoother. Trying to think of scenarios that might happen and what can be done to help them be a little easier.

The transition back to school after the implantation surgery is one of these scenarios. How to explain everything to her little preschool friends and have them understand some of Isobel's behaviours and hearing problems.

I was looking for some kind of book that would explain to Isobel's friends how her hearing equipment works and the challenges she faces every day.

As always my first port of call are the children who are hard of hearing forums - they were full of super mums that had created wonderful scrapbooks, filled with photographs and beautiful hand written messages - true labours of love. Great memories but not really what I had in mind. 


Next port of call was Google -I struggled to find anything in the market, so I started to prepare myself for creating my own book, trying to ignore just how long it would take. Until one afternoon whilst aimlessly surfing I came across Experience Books www.experiencebooks.co.uk.


Online I adapted a character to look like Isobel and I clicked different criteria regarding her hearing equipment and difficulties she experiences. Also a really nice feature is listing different things she enjoys doing and what her everyday life is like.


We're looking forward to finding out what her friends at school make of it.

 



One of the pages from her book



Implanted

The first part is over!

Last Monday (13th August) we checked Isobel into the Children's Hospital at Severance in Seoul.

We got settled into the room, unpacked a few bits and got ready for the 'camping trip' that Isobel thought she was having.

We told her that she and Mummy were going on a camping trip and that she would also be getting a new special computer ear.

She was so very brave when I had to shave the hair around her ear. The nurse measured 3 cms around her ear and drew the shape on her scalp with a Biro. After reassuring her it wouldn't hurt, I set about shaving the hair up to the drawn line.

As if that wasn't enough for the first night,
she then had to have a skin test for antibiotics because she's allergic to penicillin.

She then spent the rest of the evening watching movies before falling asleep.

The next morning. bright and early, the nurse arrived to fit the IV and before we knew it we were off to the Operating Room. Then began the longest 2 hours of our lives.

We tried to have some breakfast and read a while but thoughts and concerns kept flooding back to our little girl on the operating table.

The minutes slowly ticked by until the screen finally read operation complete. The worst part was seeing her in the recovery room. Her throat and chest were clearly sore, and she had this awful dog bark cough. She was so very pale and she was feeling sorry for herself - and quite rightly too!

Next was an X-ray to check that everything had been inserted correctly (it had been) and then it was back to the ward for a little rest. After a couple of hours, she was allowed to nap if she wanted to, she didn't, and have a drink.

She was suffering from quite a bit of pain so the nurse gave her some pain killers. They seemed to take effect quite quickly because soon enough she was calming down and the colour was returning to her cheeks.

After a couple of hours, and a few bathrooms visits, she was walking around, dragging her IV around with her, back to her chatty, smiley self.

A restless night followed, not for Isobel, but for me. The bandage worked its way off the top of her head no less than 5 times. I had to keep redoing it so her wound wasn't exposed throughout the night.

Early this morning a doctor visited to change the large bandage for a smaller dressing. This one was much better, much less itchy and Isobel clearly felt a lot more comfortable. She wanted to wear regular clothes and was quite excitable and bouncy.

Her wound was then inspected by the surgeon, it was fine with just a little swelling, and he showed me the X-ray. It was really cool to see the device and be able to count the electrodes in her cochlea. Amazing! Even more amazing, he said Isobel was doing so well she could go home this afternoon.

With that done, all that was left was to pay the bill, pack up, and get out of Dodge.

So, that's what we did.






It's good to be home...





Isobel's Cochlear Implant

The Cochlea

 

INTERNAL PARTS 



This is the Maestro PULSARCI100 cochlear implant by MED-EL. This is the device that Isobel will be fitted with on Tuesday. Being a huge fan of labelling in my classroom, I feel reassured seeing that this has a clear label about the positioning requirements.

It is light weight, made from ceramic and has been specifically designed for children and infants. Again, being an art teacher, the ceramic nature of it plays to my sensibilities. I can't explain why, but it makes me feel more comfortable that it isn't titanium. This will be surgically placed under the skin just behind her ear.





This is a a close up of the electrode array that will be inserted into Isobel's cochlea. It's actual width is just 2.4mm and 31mm long. The cochlea, approximately 7mm in diameter, the size of a pea is one of only two organs that are full size when you are born. In the cochlea are three fluid-filled canals called the scala tympani, scala media and scala vestibuli. These canals are responsible for transmitting sound vibrations to the brain. It is in one of these canals that the electrode array of the cochlear implant will be inserted.



The cochlea converts sounds from mechanical vibrations into signals that are passed on to the brain via the auditory nerve. This process is performed by specialised hair cells inside the cochlea. These hair cells are arranged according to pitches or tones. This arrangement is referred to as tonotopicity. In normal hearing, low-frequency pitches cause nerve fibres to fire in the apex, or middle of the cochlea. High pitches cause nerve fibres in the base of the cochlea to fire. Isobel has difficulty with the low-frequency sounds, so she will need the electrode array to be fully inserted.

 

EXTERNAL PARTS

This is the audio processor that she will wear over her ear. It consists of a control unit, a battery pack, and a coil that transmits information through the skin to the receiver in the implant.

She will even have her own remote control!

HOW IT ALL WORKS

 

Summers End, Implant Beginnings

Summers End

What a whirlwind our summer vacation has been. Every-one has marvelled at our wonderful girl!

We never could have imagined the changes that have taken place in Isobel. When we look back to the previous summer they are so many, we couldn't count them all.

One of Isobel's favourite things from the summer was playing hairdressers with Nana, she would ask every day - 'first dinner, then shower, then hair?'

She has played nicely with her cousins, and strangers at farm parks and playgrounds. We have all had a fabulous time.

It still makes us smile to think back on all the wonderful things that different people have said about her over the past five weeks.

 

Implant Beginnings

Today however, has not been so much fun.

Today, Isobel had her pre-surgery tests which just seemed to take forever. It seemed that the whole of Seoul was at the hospital today, and they were all having the same test that Isobel was having at the exact same time that she was having it.

The day started with no breakfast, she had to fast for 8 hours. Upon arrival at the international clinic, we were asked to produce a 'sample'. Well that was eventful! Due to 'nil by mouth' for the last 8 hours, Isobel promptly announced to me, 'No Mama, I can't,  there's no pee-pee'.

We then took matters into hand and sneakily gave her some water.

As we waited for the water to filter down, it was time to take blood. I do believe that some of the people in the waiting area thought that a young child was being murdered in the treatment room. It's a good job that no other children were waiting for any treatments because they would have gone running for the hills.

Surprisingly, after the needle was in, she wriggled her head round to see what was going on and was quite mesmerised watching her blood drip into the tube. Of course it wasn't much fun when the nurse decided the blood wasn't flowing fast enough and needed to try a different vein. Cue loud screaming!

Next was to try for the sample again - 'No Mama, still no pee-pee!'

OK, onward for the MRI. This test was to make sure that Isobel has a cochlea nerve. Without one a cochlear implant is useless. In order for Isobel to remain still while having the MRI she needed to be sedated. This meant inserting an IV. Yes, indeed more screaming. IV secured, we now waited to go in for the MRI.This is of course the exact time that the water decided to make itself known! Typical, Isobel is all attached to the IV and now she needs to go!

So, off the bathroom we go, trundling the saline drip with us. Fun and games commenced, suffice to say a 'sample' was collected - hurrah!

Sedation time arrived and we notice that Isobel's arm had become swollen. It seemed that during the 'sample gathering' the needle had become dislodged and the saline had caused the swelling. It was back to the nurse to have it removed and a new one replaced in the other arm! Our brave little girl now had 4 punctures in her arms, screamed every-time, but came back smiling when it was over.

Determined for it not to happen again, Isobel set about walking around with a very straight arm. We had 2 more bathroom visits, (too much water!) more waiting (we missed our turn due to the swelling) and then we were finally in. The anasthesiologist gave her a syringe full of white liquid that created instant sleep, before we new it she was in the MRI being scanned.

After half an hour it was complete, she came around quickly and was alert and resposive. Ready for the final test - an Xray. Nothing unusual to report here, quick and effecient and Isobel was a star. Once I had convinced her that this was a 'No owie' test.

The whole exprience was rounded off in the only way that 4 hours of tests and waiting could - with ice-cream.

Think we'll need a freezer full for next week...