Monday 24^th

Sarah arrived at 9 am for a home visit to go through the process of what happens next, and for us to sign the consent forms. She explained that it would be a slow and gradual process of Charlotte learning to hear again. she also showed us the device and some of the accessories we can get, the external part can be plugged directly into TV's, Ipods, Iphones etc and some can even be worn underwater.

The device would be switched on around 4-5 weeks after the operation and she would initially hear beeping noises, the varying pitch determining the letter or sound. Her brain would gradually adjust this so she will begin to hear speech and in time even birds singing.

It cold take as much as 6 months to make significant progress but in every case they aim to reach a level of 40 decibels, ("the speech banana"), across low and high frequency by the end of the first 12 months. Charlotte is now profoundly deaf in both ears and not getting anything at 90 decibels. The criteria for funding for implants is simply to be profoundly deaf with nothing at 90 decibels in either ear.The baby who was in the incubator next to Charlotte had cochlear implants over a year ago and has now achieved a level of hearing at decibels.

As Charlotte had a good level of hearing in her early years she may progress quicker than someone whom has been deaf all their life but the end result is the same. The Southampton Institute have implanted devices and transformed the lives of over 800 people from as young as 12 months old to adults in their 70's/80's, many of whom had been deaf for decades, if not all or most of their adult life.

Friday 21^st

A phone call came through at 10.30am. It was Sarah from the South East of England Cochlear implant centre in Southampton officially confirming Charlotte has met the criteria for NHS funding (approx £44000), and that all the audiologist's had been in a meeting and recommended which make of implant device she should have.

There are currently 3 recommended Brands of implant Cochlear (Australia), Advanced Bionics (USA), & MEL-EL (Austria). They are advising the Cochlear implant brand, which is the oldest, for a few reasons.

• Its easier to tune and that may be better for Charlotte.
• Its more robust, and knowing Charlotte was we do if she has a paddy and throws them on the floor then they will probably survive the battering.
• It comes with a remote control so we will be able to adjust the device if necessary.

It also appears that the operation will be quicker than we anticipated. We were originally told on Wednesday it would be 2-3 months wait for the operation date but they have now suggested it might be possible to schedule it for either the 16th December or the 6th January. We were edging towards the 6th January as after the operation Charlotte will have access to no sound at all and so may be distressed. At the moment with her hearing aid she does have access to a little amount of sound so we are worried about Christmas and her not enjoying it. We have now decide the sooner the better so are hoping the slot may be possible.

Sarah from the Implant centre is visiting us on Monday 24th November to discuss expectations. We know it won’t be an instant miracle but obviously, the more information we have the better. All of a sudden its real and although we are over the moon that Charlotte will now be having the implants, this excitement is mixed with trepidation. Let’s hope what is to come will all be worthwhile.

Wednesday 19^th

D-DAY. It was an early start, up at 6.30am, heating had just kicked in, Charlotte was still asleep, Dad was still asleep, but I was up getting everything ready for the day. No change there then ! Today we had to go to Southampton University for more tests to try to ascertain whether Charlotte would be eligible for cochlea implants. We have been here before and Charlotte has always refused to co-operate and after her ABR test came back as inconclusive on one ear we really needed to get Charlotte to co-operate and demonstrate her hearing levels.

Our secret weapon: Charlotte’s teacher from school. It’s a well known fact that children obey their teachers – right ? As we all arrived at Southampton University I felt quietly confident that today would be the day we would find out for certain about Charlotte’s hearing levels. It had been decided that I would not go into the testing room, but instead would view from behind a mirrored window. Charlotte would be accompanied by her teacher and our support representative from the University. They started with a few tests with her hearing aid in, Charlotte needed to listen carefully. If she heard a sound she would need to do an activity, such as placing a toy man into a wooden boat. She was cooperating, then the big test would be to take her hearing aid out. At this point I recognised the early stages of tantrum mode – but with a swift stern “STOP” from her teacher Charlotte sat nicely and the testing began. Now, I felt a slight bit of jealousy that her teacher had managed to stop Charlotte in her tracks. If I had been the one saying “stop” then Charlotte would have cheekily replied “ NO”. However, this was no time for me to be envious, there were more important things at stake. I didn’t care who was making her do the tests I was just glad that she was co-operating and it appeared we were getting somewhere.

As I stood next to the audiologist who was controlling the sounds entering into the test room, I glanced down at the equipment. It appeared to me that Charlotte was hearing levels of around 70 decibels, surely this couldn’t be right ? We had expected Charlotte to be 90 decibels or below. That is where she needed to be in order to quality for funding from the NHS for cochlea implants. I was a little confused. In my gut I knew Charlotte’s hearing was bad and I was so desperate for her not to be just outside the criteria for a cochlea implant that I was hoping, for the sake of just 10 decibels or so that Charlotte would fall within criteria, so that she may get the funding needed from the NHS for 2 cochlea implants. With all the tests complete, I was then “allowed” into the test room with the audiologist, I gave Charlotte the biggest hug ever. I was so proud of her and she seemed happy that I was happy and equally proud of herself, which is Charlotte's way.

t was then that it was confirmed. Charlotte’s level of hearing fell within the criteria that she could get funding on the NHS to have cochlea implants. The decibel levels appearing on the machine needed to be adjusted by 25 decibels so in fact where I thought she was hearing 70 decibels, she was actually hearing at 95 decibels. After losing most of what little her hearing she had last February, it had been a frustrating journey but at last we knew, at least we can now move forward and at least Charlotte will get her ears “fixed”. It may not be in time for Christmas, as we had all hoped, but it will be soon.

Friday 7^th

Charlotte’s CT scan results from 24th October came through today. Her consultant Mr Hellier reviewed them and wrote that both the cochlea's appear “normal”, which is good news as any damage may have prevented her being suitable for implants.

Charlotte was assessed last year at Great Ormond Street for the Selective Dorsal Rhizotomy (SDR) spinal operation to enable her to walk unaided. The Consultants however decided it was too risky , based on the results of a previous CT scan, which showed the Cysts left all over her brain as a result of her fungal Brain Meningitis infection,

He has made a comment that her right mastoid bone was better pneumatised than the left, so I it is possible Charlotte may have a slight cold at the time affecting her left side. The ABR scan confirmed there was nothing left in her right ear but they could not get a conclusive result in her left.

Friday 24^th

We arrived with Charlotte at the John Atwell Ward in Southampton General 8 am yesterday for her ABR,CT & ECG scans/tests. We should know the result of the CT scan in a few weeks but had a call early this morning confirming the results of the ABR scan. They confirmed Charlotte had nothing in the right ear so that met the criteria but the left ear was inconclusive. The Criteria for an implant is that hearing test show nothing at 90 decibels and we believe she may be just out of Criteria ie 85-90 in the left .

After asking for clarification about what happens next and asking why an ABR test she had at Basingstoke Hospital earlier in the year could not be used, We were sent the email below from the Audiologist at the University of Southampton Auditory Implant Service. She will now attend the Cochlear Implant Institute on the 19th of November for tests focusing on the left ear to complete the picture. If she is confirmed at 90 decibels in both then she will qualify for NHS funding otherwise we will have to raise approx. £44000 and go private. If she falls just short in the left ear ie 80/85 decibels then we can still try and fight her case for funding.

"Just to clarify the situation as it stands at the moment in the UK; to get funding for a cochlear implant (whether it be for one or two ears) the hearing levels must fall within the NICE guidelines for both ears."

"Indeed we always consider all previous Audiological results when trying to determine hearing levels. So yes we have looked in detail at the ABR results from Basingstoke. When we interpreted the results from Basingstoke what we found was that the test had not been done at a high enough intensity. So although we can see from these results that there had been a drop in hearing on the right, they did not allow us to demonstrate the right ear was within criteria. The ABR done on Thursday was done at a higher intensity. There was conclusively no response at this level on the right so we can now say this ear is in criteria. So in this way we are one step further forward. On the left side the ABR results from Basingstoke showed a clear response at 80 dB, this trace placed Charlotte out of the NICE criteria. The ABR on Thursday was again performed at the higher intensity and this time showed no evidence of a response but unfortunately due to uncontrollable electrical interference in the hospital, the traces were “noisy” so this has caused the traces to be interpreted as inconclusive. Although this is frustrating as it does not give us a conclusive evidence, it is again another step forward as is does not place Charlotte out of criteria".

"I have chatted with Sarah about what the plan would be if Charlotte does not co-operate on the 19th. I understand that Charlotte has regularly been performing the type of testing we require of her in her school and so if things don’t quite go to plan on the 19th we would like to have the next audiology appointment in school. Sarah will be in touch to discuss this further".

Charlotte , at the age of 7 years and 3 months, was also weighed in at being 19.55 kg, or in "normal money" 3.07 Stone.

Wednesday 16^th

We have had notification of Charlotte's next big Appointment on her Cochlea Implant Assessment Journey in Southampton Hospital on the 23rd October which we will post an update for. She will spend the day in the Children's ward and have a CT Scan, ABR Scan and Heart Scan all under general Anaesthetic.

Wednesday 16^th

We took Charlotte back to the South East of England Cochlear Implant Centre for 2 appointments. Firstly a repeat of the failed July Hearing tests 10:30 - 12:30 and then a medical 2:30, but unfortunately it was a repeat of July. They tried for an hour then gave up as Charlotte would not sit still in the chair and co-operate. She just had tantrums and crawled around the floor.

She still does not have the level of understanding needed to be able to ask her to sit still and let them do some tests, and until we achieve this we will not be able to go any further down the road of Cochlear Assessment. It is very frustrating for all and what with her hearing loss, severe learning difficulties and developmental delay this is a big set back. They needed the one hearing aid to be removed for the tests but every time we tried Charlotte would become hysterical and crawl away.

Mummy is returning here with Charlotte tomorrow for a 2 hour appointment with a psychologist as unless we can find a way of improving her behaviour so that she will sit still and allow tests to be done we can go no further forward.

Monday 28^th

Charlotte went to Basingstoke Hospital today and was given a very big Hearing Aid, tuned up as much as possible, for her right ear in the hope it may give her some hearing. She got very excited thinking her ear was being fixed. Sadly it quickly became apparent it did not give her anything and confirmed she has zero hearing in her right ear, even with an Aid so a Cochlear Implant is her only way forward.

Wednesday 16^th

We took Charlotte to the South of England Cochlear Implant Institute today for her first 2 appointments. Charlotte walked straight up to reception, said "hello" and "I want big hearing aid" . She thought she was there to get her ear fixed and a bigger hearing aid would do the trick. It is difficult as she is constantly looking at us and saying "fix ear" . she knows what she has lost and wants it back so much.

We had an hour long meeting 1 pm to go through what the process would involve and see the types of implants available. The second appointment at 2 lasted around 2 hours and involved hearing tests . They could not get all the tests done as Charlotte was really playing up and would not co-operate.

It was explained that funding Criteria has tightened up the last few years and now a recipient has to have nothing at 90 decibels in BOTH ears in order to qualify even for a Cochlear implant in one ear. The last Audiology test at Basingstoke showed nothing at 90 Decibels in her right ear ie profoundly deaf but indicated something at approximiately 80 decibels in her left (severely deaf). This makes sense as she has given up wearing her right aid but wants the left in and gets upset when we take it out at night , as she has zero hearing without it in.

This does mean that Charlotte could miss out on funding for an implant even in her left ear. They did recommend an implant in both ears but that would permanently kill any unaided hearing in her left ear so we will have a difficult decision to make at some point.

We were also told that if we did not get funding and wanted to raise the money privately we would need around £43000 but we have the support of the team at Southampton and they said they would argue her case if it came to it.

Charlotte will have an ECG scan on 21st July to make sure her Heart is okay and then further hearing test at Basingstoke Hospital 28th July. She will then return to Southampton 13th August and 17th September for further Assessments . We are hoping to have a better idea of our options and whether we will get funding by September.

Thursday 29^th

Exactly 7 weeks after her ABR test at Basingstoke Hospital, which confirmed she had nothing in her right ear so a Cochlear Implant was the only way forward, Charlotte returned to have a review of the results. Samantha had to wait for an hour to be seen by the Dr whom had not even looked at her notes. He spent around 5 minutes with Samantha asking a few questions and then confirmed what we knew 6 seeks ago and said he would refer Charlotte for Cochlear Implant assessment.

We can expect the first of many assessment appointments at the Cochlear Implant Institute in Southampton University in around 6-8 weeks so it looks unlikely she will have it before Christmas. We have to also hope she gets the NHS funding as it is an expensive procedure as is the external device.

Charlotte also had a bad fall a few weeks and has not been able to use her walking frame since. She saw the Dr yesterday whom confirmed she has torn a ligament and, worse case, it could be 6 months before she can walk again so we have to take her out in a push chair