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JULY
16/07/2014

Monday 28th

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 16th

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.

 
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MAY
29/05/2014

Thursday 29th

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

 
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APRIL
10/04/2014

Thursday 10th

The next stage of Charlotte’s Story appears to have begun. Just when we thought we had faced everything we had to face and just when we thought we knew what the future would be for Charlotte, it appears we were wrong.

Charlotte has had a sudden dramatic loss of hearing in her good right ear. The ear she used really for accessing most language. Charlotte went to Basingstoke hospital today to be put under sedation for the ABR test to be carried out and unfortunately the results just really confirm what we already knew. Charlotte has lost all hearing in the right ear. No brain response was measured at 90DB which now means her right ear has a profound loss and her left ear is a severe to profound. It’s now time to reach to the strength box again and dig some more out as that is what we will now need.

The next step has to be a cochlea assessment and hopefully a cochlea implant as soon as possible as Charlotte is becoming quite frustrated that every hospital visit the ear isn’t fixed. She does not understand what has happened and simply says “ear not working, hospital fix it”. Its hard to see her like this. She also keeps shouting "HELLO" to herself as loud as possible in an attempt to her it she knows her right ear has gone and only wears the hearing aid in her left ear now

At least Charlotte went to sleep under sedation, although fought it for 45 minutes, then suddenly got the hiccups and fell asleep. They were able to then carry out the full set of tests which took an hour and a half and confirmed the worst really. But we now must as a family face this next hurdle, but we will get over it, it appears we haven’t yet reached the finishing line with Charlotte. Hopefully one day we will at least be able to explain why all this has happened and is happening to her, of that I'm certain.

 
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MARCH
20/03/2014

Thursday 20th

Tests today at Basingstoke Hospital Audiology Dept

Charlotte has had hearing aids since around 8 months old but has always refused to wear. The only time she would wear them the last 6 years has been when she was at School.

So we were really pleased when about a month ago she started wanting to wear her hearing aids and would even ask for them. we noticed her speech really started progressing too. I think we now understand this sudden change. Around 2 or 3 weeks ago we began to suspect a deterioration in the hearing in her right ear . Her left ear is bad at high and low frequency and her right ear was bad at high but almost normal at low frequency at around 20 decibels. She has had some kind of progressive deterioration in the right ear and began to ask for the hearing aids as it got worse. Her School had also noticed a change and were worried too.

I took her to the local Health Centre last Thursday assuming her ear was just blocked by wax but the ear canal was clear so we booked an emergency appointment with the Audiology Department at Basingstoke Hospital, which took place 13:00 pm today.

The news was rather devastating, as the tests indicated she has gone from 20 decibels to 90 decibels, ie profoundly deaf, at low frequency in the right ear. As most letters and sounds fall within the 20 - 50 decibel range and hearing aids can only amplify by about 30 decibels she won't hear anything even with hearing aids now.

The hospital have been another appointment for 1st April to try and get a clearer but it looks most likely we will be going back to the Southampton Cochlea Institute where she previous went for an assessment for implants. At that time they evaluated hearing aids would be enough.

 
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SEPTEMBER
17/09/2013

Tuesday 17th

Charlotte had her fist riding experience this morning and will do so every Tuesday from now on. Her Special Needs School, The Henry Tyndale in Farnborough, have arranged a morning session for her class with the Aldershot branch of the RDA, Riding for the Disabled Association, (www.rda.org.uk).

Charlotte really enjoyed it and did not seem in the least bit intimated by the horse, it was more the other way round. We are hoping this will also help strengthen her core muscles and hep improve her walking.

 
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