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...

Summer Vacation

We have finally recovered from the 5514 mile journey from Korea to England, and we kind of have the jetlag under control.

Isobel has been 'wowing' her relatives with all the changes that have taken place in her behaviour, personality and language development. She really is the star of the show! This summer is already such a completely different experience from last summer.

She has been very excited to meet everyone, interact with them and chatter along to them. It isn't always possible to understand what she is saying, but usually after a couple of tries and some Mummy/Daddy interpretation the conversation goes smoothly.

She has already enjoyed riding by herself in Nana and Grandpops' car (something that would never have happened last summer), feeding the ducks and walking through the market.

Currently, we are in Weymouth where she has enjoyed walking along the beach, eating fish and chips on Grandad's boat and taking in the hustle and bustle of a seaside town. The size of the seagulls are amazing to her but she does find them somewhat intimidating.

AVT is going marvellously. With so many willing helpers, Isobel is really enjoying the games and lesson as well as the opportunity to show off the skills she has already built up. All that coupled with the story tellers and everyday life filled with new vocabulary and experiences, her language is coming along nicely.

It is so nice to keep hearing 'I can't believe how much she has changed since last summer...'

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?