Making the decision for Alice to have her first CI was, for us, an easy one.

Alice could hear nothing useful. She had no language.

Whilst there were obviously risks involved, not least whether it would actually work or not, the miracle of hearing was something that far outweighed the risk in our minds.

As we have written numerous times on this blog, Alice has been doing very well with her CI. Her language continues to improve and, in short windows at least, she appears normal. The gap is narrowing and, for the first time since we found out she was deaf, there is a small chink of light at the end of the tunnel.

Now let’s throw a spanner in the works. Do we have her other ear done?

We always had the option of having Bilaterals implanted simultaneously last year. The advice of the surgeon (based on Alice’s ANSD) and our comfort threshold meant that we went for one at the time, with the option of a second later on. Last March when the CI journey began, the second wasn’t even on our minds. Now the time has come to decide, only this time, the starting point is very different.

Alice hears well and is progressing well with her one CI. Many children only ever have one and continue to do well. The evidence for the benefits of a second is patchy and largely annecdotal, but on this we must base our decision.

It may well give Alice benefit, particularly in noisy situations, but she will be able to cope without it. Equally, there are the odd (albeit very rare) stories of the second implant causing a child to reject the first. Do we really want for Alice to take a step back? More to the point. do we want to put our beautiful daughter back through the anguish, pain and confusion of another 4-5 hour surgery?

Whatever we decide Alice will have to live with it for the rest of her life – hopefully she will thank us for it one day, whatever the decision is.

But tell me honestly, what would you do?

A word of advice for anyone in our shoes. Never take anything for granted and, by and large, when it comes to the bureaucracy, never take anyone at their word.

The Statementing process (statement of special educational needs – the means by which the council / LEA apportions money to pay for additional care for children with special educational needs) is and was new to us. No matter how many times people have tried to explain it to me, I am none the wiser. Essentially, there are two parts to the process. Firstly you apply for an assessment and then the assessment decides what your child’s additional needs are and, to what extent they will be paid for.

Being approved for assessment, we were assured, was a formality. At the same meeting Alice would be approved for her assessment, she would gain ‘discretionary funding’ to pay for additional help while the assessment was formalising the longer term solution. “Don’t worry” we were told.

After reams of paperwork pulled together by Alice’s School, AV, The ToDs and us, the application for assessment went to a panel last week. Today we got the letter telling us of the decision.

Alice was refused the assessment.

The letter patronisingly referred to appreciating that Alice had ‘Hearing Difficulties” and that they understood we would be “upset by this decision”. She is profoundly deaf. CI or no CI, she is and always will be deaf. It’s not going to go away. Morons.

There is an appeals process.

Hell hath no fury.

The case for appeal is already being prepared.

Alice is still happy and oblivious and loved the snow.