Confusion

It is intriguing that the further we move through Alice’s diagnosis and assessment process, the more I seem to lose sight of why the process itself is necessary.

That’s not to say that I will ever forget that the end-game is what we think is best for Alice.

What I think I am trying to say is that you become so focussed on the goal that you forget why it is that they need to push, pull and poke my beautiful daughter in every way imaginable two or three times a week for seven months. The opinions we have sought from people beyond Alice’s Doctors have convinced us of one thing for sure. If we want Alice to speak, then a CI is our only option.

As you may be aware, here in the UK, after an appeal process, the National Institute for Clinical Excellence (NICE – there’s a misnomer if ever I’ve heard one) has now approved all children for whom a CI is the recommended intervention for bilateral implantation. Everyone we have met with experience of bilaterals says they are the way forward, be they parents or impartial professionals. Ergo, Bilaterals are the way forward for Alice.

I don’t even know whether I really believe this myself. I have long since stopped knowing why Alice will have needed over 14 sets of VRA by the end of this. Are we learning anything different or is Alice really at the mercy of an opinion?

I can’t even think about the surgery right now. The implications of what this will entail – holding my tiny, beautiful, delicate daughter as they put her to sleep so they can cut into her head and skull – seeing her wake up, distraught and confused.

Will it all be worthwhile?

What would you do?

The St. George’s Treadmill.

So by my reckoning, Alice’s CI assessment will, by the time she is approved (or not as the case may be) will have encompassed: 5 sets of Audiology, 2 SLT assessments, 2 TOD assessments, CT Scan, MRI Scan, ECG, Renal Scan, blood tests and an Eye test. Anyone embarking on this journey – be prepared.

That’s not to say, of course, that it isn’t all worthwhile. If Alice get’s where she needs to be, then I would give up anything to help her along the way.

The one thing I have noticed about the CI assessment is (and this may just be down to people and personalities) quite how ‘formal’ they are. We were very lucky with Dr. Wendy given her warmth and willingness to talk at length to two worried and largely confused parents. It helped us get through the confusion and emotional stress of the past six months. The latest assessments are much less ‘discussive’. They are more a case of come in, sit down, do test, go home.

My greatest frustration came when Alice was having her first SLT assessment. This involved me, as her father, answering questions from a form about where Alice is in terms of her speech and communication ability. Now for the record, I absolutely see the value of this. Any assessor cannot possibly hope to make a judgement of Alice’s ability based on an hour’s observation – it has to come from her parents who know her best. Each question was supposed to be answered ‘yes’ or ‘no’. 

I am not entirely sure whether I managed to answer a single question with a ‘yes’ or ‘no’ by the end of it. This made me rather cross as whilst I can see the point of the questions, most of them are of the sort: “can Alice draw a line with one hand whilst brushing her teeth with the other” – I have no idea as she has never tried. And so it was, I answered most of the questions like this. I wasn’t trying to be deliberately obstructive (although anyone who knows me will know this as a rather annoying trait of mine) but it is difficult to answer a question ‘yes’ or ‘no’ if you are guessing at the answer.

What health professionals and therapists need to realise throughout this sort of process is that whilst their input to Alice is first and foremost the most important thing, parents need hand-holding too. They need to know what is going on and, more importantly, why it is going on. They need to know everything is ok and what the various tests are actually telling them. Are we on course? Do the professionals still think a CI is the best option? Are we still on schedule? I ask, but rarely get a coherent set of answers.

And so we are now on 2-3 weekly appointments as part of Alice’s assessments which, all being well, will be finished by early February (I think?). Alice, as ever, carries on regardless. Still smiling, still amazing me with her patience and attention.

If nothing else, it’s costing us a fortune in parking.

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