Thursday 10^th

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.

Thursday 20^th

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.

Tuesday 17^th

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.

Thursday 1^st

Charlotte had her 11:30 Appointment at Great Ormond Street Hospital for the SDR assessment. We were with 4 Doctors for about 45 minutes and then they went to another room for 10 minutes to discuss it and make a decision, which is that they do not feel it is right for Charlotte for several reasons.

Firstly, they do not want to risk such an operation where a child, like charlotte, has had Brain damage. In her case the meningitis left lesions and cysts all over her brain. She also had Hydrocephalus,(water on the brain), which left her with swollen ventricles although fortunately it did not get so bad that a shunt was required.

Secondly she does not have the level of understanding required for the operation and extensive physio required, although she is 6 she has learning difficulties and developmental delay and is currently at the level of a 3 year old.

Thirdly, they think she has more than once factor contributing to the stiffness , some of which the SDR may not resolve, so they could not guarantee how much better she would get.

On a more positive note the Doctors were impressed with her walking abilities without the frame , she started showing off and staggering around the room and seemed optimistic about her continued progress without the SDR operation.

They are going took a lot of video footage and are going to produce a report with recommendations which will be sent to her GP so we will wait for that. The consensus was that if we can get her left foot flat as opposed to being on tiptoe then it might solve a lot of the issues.

Charlotte was also weighed at 2 Stone 8 and measured at 3 ft 5.

Her language and understanding has come on leaps and bounds this year and she has also been telling everyone she is going on a plane, we are taking her to Majorca on Sunday for 2 weeks and I will be uploading a new photo section when we get back

Monday 15^th

Happy 6th Birthday Charlotte

Charlotte's Consultant wrote to Great Ormond Street Hospital last May about the possibility of her being assessed for the SDR Spinal operation.

How appropriate that we received a phone call from Great Ormond Street Hospital this morning,on her Birthday, with an appointment at 11:30 on the 1st August to be assessed for her suitability for the SDR operation, it should last 1 1/2 hours.

It will be the beginning of a long road with no doubt lots of twists and turns ahead but if she is considered a candidate and we also get the funding then this will transform her life. The NHS only does a handful of these operations in the UK every year and part funds it. They pay for the basic operations costs but it is followed by 2 years of extensive Physio and we need to fundraise for the rest. To have this operation done in the USA would cost around £60,000.