Monday 6^th

Today we were enjoying a sunny Bank Holiday Monday in the garden on a rare sunny day when we experienced one of those miracle moments one just has to share.

We never had any guarantee what level of hearing charlotte would achieve from the cochlear implants but she just heard birds singing for the first time in her life and said "what that noise". We explained it to her and she said "hello birds "

We were so worried the first week after charlottes Cochlear Implant switch on 16th January when she initially refused to wear them but now she hates to be without them and has changed from being a very Frustrated to a happy child. The change has been miraculous"

We were so unsure about the cochlear route but it is the best decision we ever made.

Wednesday 25^th

Exciting results in today from Charlottes 2 month post "Switch on" appointment at the South of England Cochlear Implant centre.

We are very proud of her as not only did she co-operate with all the tests for the first time but she is also hearing down to 40 decibels across most frequencies or even a bit better, they didn't test quieter than 40 decibels. The Implant Centre have this as their yearly target and Charlotte has only achieved it in 2 months !!! having gone from nothing at 90 decibels.

This means in the 9 weeks since switch on she has gone from being classed as having profound/severe hearing loss to mild hearing loss and can now hear down to a whisper. It is exciting to think where her language could be by this time next year

She now sings or talks loudly to herself a lot , I think she loves the sound of her own voice , I think we better invest in some ear muffs for us.

Monday 23^rd

Another appointment at the Cochlear Institute in Southampton today and more positive news. Our Charlotte tested for hearing at 60/ 65 decibels which is the level for most conversational speech, down from nothing even at 100 before the implants. They hope to have her at 40 within 12 months.

• 0 - 20 decibels Normal hearing
• 20-30 Mild Hearing Loss
• 40 - 60 Moderate loss
• 70 - 80 Severe Hearing Loss

Although she still isn't great at doing the tests she was able to distinguish between different objects that sound similar after being played a recording of someone speaking - such as horse/house - plane/plate. We are so proud of our little girl and so happy !

Tuesday 10^th

The first 3 weeks since Charlotte's "switch on" and the days that followed turned out to be pretty stressful as we were having difficulty getting her to wear her the processors after switch on. She has also not been co-operating at the tuning sessions so they have had to adjust the processors conservatively based on guesswork. The brain needs time to adjust to the sound and for the Auditory nerve to respond to the signals. For the first 2 or 3 days she wore them at School but refused to wear them at home which was a worry. She then started to wear them at home, initially for very short periods at a time but this slowly increased. After a few weeks she refused to wear the left one at all, often saying "not working" because she was obviously not getting any sound on that side.

She had another 9 am appointment at the Cochlear Centre in Southampton yesterday and they increased the level of processors again. They must have finally reached a level where she could hear something in the left as she finally wore both last night.

Although, she is in no way co-operating with her tuning sessions - which means more regular appointments, she is now starting to get some benefit from them and is now responding to her name....singing along to her favourite Disney programmes and answering questions I ask without even turning to me ! What a difference 3 weeks make !The more the Auditory nerves start to be stimulated by and respond to the signals from the processors the more Charlotte will hear and the tuning sessions will get easier and more exact.

Wednesday 7^th

Charlotte had a 2pm appointment at the South of England Cochlear Implant Institute. She had a check-up lasting around 10 minutes and the last plasters and stitches were removed, it was confirmed everything has healed well.

Samantha was then given a large black case containing everything we needed including the external Cochlear devices (similar to large hearing aids) , a remote control for them so we can alter her hearing levels, spare battery packs and instruction manuals. She then spent about an hour being shown and trained on all the equipment.

We were told Charlotte can wear her glasses again, and she was very excited to be given them and would not take them off all evening, she has missed them the last 3 weeks as her eyesight is probably as bad as Dad's. We have also not been able to give her a shower or wash her hair the last 3 weeks and have had to use a spray on dry powder shampoo and will probably give her the first one in a week or so.

Tuesday 6^th

Today we received the full list of Charlotte's appointments at the South of England Cochlear Implant Centre for the next 6 months. We cannot wait for the initial switch on as Charlotte is clearly very frustrated and playing up all the time, especially during the night when she insists on turning every light on and moving around so we are not getting much sleep. I have had to remove the light bulbs from every light except the bathroom light. she is tall enough to reach most now.

There have been a very small number of cases where the implant does not work and we don't know what level of hearing she may have at switch on, every person is different. It could be anywhere from minimal to a good level, it can take 6 months to reach a significant level of hearing,up to 12 months to reach the "Speech Bubble" and 24 months to reach 90% plus level. We will have to be patient a bit longer, her Brain will need to re-learn how to hear and understand sounds but at least her Journey will start on the 16th.

• Wednesday 7th January, Post Op check-up and Pre turn on training 2pm - 3.15 pm.
• Friday 16th January, 2 – 5pm – Tuning 1
• Friday 23rd January, 1 – 4pm – Tuning 2
• Tuesday 27th January, 9 – 11am – 1 week assessment
• Monday 23rd Feb, 11 – 1pm – 1 month assessment
• Monday 20th April, 11 – 1pm 3 month assment
• Tuesday 21st July, 1 – 3pm – 6 months

Wednesday 17^th

So, morning finally arrived and it was time to get all the final checks done in order for us to be allowed home. An X-RAY was needed, doctors checks were needed, the pharmacy needed to send her antibiotics, but finally at 2.30pm we had everything required for her to be discharged and we were on our way home. Just 24 hours after she had come out of the theatre, we were driving home. Just as well as you would never have believed that Charlotte had had the operation the day before and she was back to her usual cheeky self, which meant for mummy and daddy – being a handful.

As we arrived home, we could not believe that Charlotte has had the op, she has actually accepted the silent world for now, it is now obvious that she had minimal hearing left and was understanding much of what we were saying through Lip reading.

At 6pm Charlotte fell asleep, a first for Charlotte but obviously everything was catching up with her. But we were home, Charlotte was ok, the op had happened and now we could just sit back, Enjoy Christmas and wait for the big switch on at The South of England Cochlear Implant Centre in Southampton on 16th January 2015 at 2pm.

Tuesday 16^th Charlotte’s Cochlear Implant Operation

So, after what has seemed like ages getting to the point of knowing that Charlotte was eligible for 2 cochlear implants the operation has come around ridiculously quickly. Her Journey started when she lost almost all of her hearing last February and then only 3 weeks after being given the green light the day of the operation has finally arrived.

We were surprisingly calm when we got up at 5.30am ready for the 6.30 am start to get us to Southampton General Hospital for 7.30am. Perhaps so because it has happened so very quickly and we haven't really had time to think too much. We waited until the final moment to wake Charlotte and dressed her in a lovely Christmas jumper. We set off, on the dot at 6.30am.

“Mummy, where we going” Charlotte said over and over and over again on the journey down to Southampton. She knew where she was going but for Charlotte, constant reassurance and reinforcement is needed. We have spent the last 10 days preparing Charlotte for what was to come. It isn’t easy with Charlotte. As she has learning difficulties, everything needs to be gone over time and time again and I prepared a book to help her understand what was going to happen.

By this stage, Charlotte knew that we were going to hospital, she would be going to sleep, when she woke she would have a big bandage on her head and may feel poorly, then she would have a drink and some biscuits and that Mummy and Daddy would be with her all day at the hospital and that mummy would sleep overnight. What I wasn’t sure of was whether Charlotte fully understood the fact that she would have complete silence until the switch on of the cochlear implants. She would lose the little hearing she had remaining in her right ear.

As we arrived at the hospital we were expecting to be waiting around for a late morning start but we were bumped up the pecking order when another child who was in for a more minor operation arrived with a cold, so before we knew it, Charlotte was in her operating gown, and on her way to the operating theatre. We had been expecting a midday start but she was taken to Theatre 9.45 am.

I (mum) went in with her whilst they gave her the general anaesthetic, still feeling quite calm, I hadn’t expected this. I thought I would be a gibbering wreck, but I actually had 100% confidence in the surgeon Mr Hellier who would be carrying out the operation.

We had been told to expect up to 8 hours waiting around so we had decided to keep ourselves busy. We got in the car and drove to Southampton City Centre and did some shopping to keep our minds off the wait. We also had a bite to eat and returned to the ward at 2.15pm, expecting at least another 2 hours wait. Within 15 minutes a nurse arrived to say whether we wanted to see Charlotte. I asked “Is she all done then”. “yes” she said.

You could never see 2 people move so quickly as we rushed to the recovery room to see her. It was at that point when I saw Charlotte with her head all bandaged up that it suddenly hit me. I became overwhelmed with emotion and was so happy to see her. We both were. There were tears and hugs but we had to pull ourselves together. We couldn’t let Charlotte see us like this as she may become scared.

After a bit of a wait, we got her back to the ward where she actually started to come around quite well. She was quite happy sitting on her bed and we talked to her about her bandage and she was ok with everything. She looked a bit dazed but found the strength to much on a biscuit.

Sarah, our key worker from AIC in Southampton came to visit and she commented that she had never seen a child come around so quickly from the operation. It was no surprise to us as we were used to seeing Charlotte bounce back. She really is an amazing child and we continue to be so proud of her. Alasdair left at around 8pm and it was time to try and get Charlotte to have some sleep. It was a restless night being woken by nurses checks, and other children arriving on the ward. You never get any sleep in hospital but Charlotte managed a little bit in between the disturbances.

Wednesday 3^rd

On 3 Dec 2014, at 18:07, we had an email from Sarah from The Cochlear Implant Institute "It’s on for the 16th at SGH!", finally the news we have been waiting for since her hearing pretty much all went , for no apparent reason, over a couple of weeks last February.

She has a pre-op appointment at Southampton General Hospital at 4 pm on the 10th and will then be given an ECG and final examination on the 16th. Assuming everything checks out the 8 hour operation will follow the same day. She is due on the ward 7.30 am .