• Alice’s Last Session With Dr. Wendy

    December 4, 2008 By in Uncategorized Leave a comment

    e·nig·ma (ĭ-nĭg’mə) n.

    One that is puzzling, ambiguous, or inexplicable.
    [Latin aenigma, from Greek ainigma, from ainissesthai, ainig-, to speak in riddles, from ainos, fable.]

    4 months of appointments later – Five sets of VRA tests, four sets of OAEs, two sets of ABRs, two stapedial reflexes, one CT scan, one MRI scan, two sets of hearing aid molds – this is the best word I can come up with to describe our darling little Alice.

    We were back at St. George’s today (no parking nightmare this time because the nanny, Nicci, brought Alice along) for our final session with Dr. Wendy. As Alice is now on the CI programme, all her Audiology (and there is plenty more to come) will be done by the Audiologists within the programme.

    Claire and I were rather sad when we left. Dr. Wendy has been a great source of both information and help over the past few months and has been fantastic with Alice. More importantly, she has been happy to sit and listen to us rambling on with our theories and fears and has always responded with a smile and words of encouragement.

    No doubt we will see her again, if only in the corridor.

    Today’s tests were, as ever, baffling. The VRAs started off ok (again), but seemed to tail off (the enigmas that are Alice and ANSD). Alice has got rather used to waving at Pooh and Piglet in their little boxes and, as ever, performed as a model patient. Dr. Wendy firmly believes that a CI is the best possible course of action for Alice and hopes she will do well – all the indications are in her favour, but we wont know until a long while after it is fitted. As I said before, the day she says ‘Daddy’ I will feel like it has all been worthwhile.

    Alice’s new molds will have Christmas pictures in them (how very festive of her) a Father Christmas and a Snowman. Let’s hope she has her CI before people start to look at her oddly.

  • Welcome To The World Of Cochlear Implants

    December 1, 2008 By in Uncategorized Leave a comment

    Another busy day at St. George’s in store. Today, we officially enter the CI Programme. In short, the programme has three elements. Assessment, Surgery and Therapy/Aftercare. The assessment part serves two purposes: Firstly, from a clinical point of view to assess whether a CI is the best treatment for Alice given her condition and needs and secondly, to justify funding from the PCT (primary Care Trust). Not only do we not want to have our daughter’s head drilled open if not entirely necessary, but the PCT certainly wont fund a CI, at a cost of around £36,000 if it is not the best course of action.

    The assessment itself involves any number of tests and meetings. These cover Speech and Language assessments (x2), Audiological assessments (x2) and a number of sessions with the various team members of the Programme (in addition to the scans and ABRs Alice has already had).

    Today is more ‘introductory’ than anything else. First off (after the usual nightmare parking etc.) we are to See Dr. Borka Ceranic, the Audiologist from the Programme. This is more an exercise in form filling than anything else, but Dr. Ceranic also sends Alice for further Audiology while we are there. In addition to further OAE and VRA testing, she suggests Alice should have a Stapedial Reflex test. The Stapedial Reflex, for those of you who don’t know (which included me until 24 hours ago) is the mechanism by which the ear protects itself from loud noises. A muscle tightens around the Stapes (the innermost bone in the ear, hence the term Stapedial) and stops the bones in the middle ear from moving as markedly. This results in around a 20db reduction in actual volume to the inner ear. We discover that Alice has no Stapedial Reflex. I’m still not sure I understand exactly what this means in practical terms, other than it suggests Alice’s problem is in the inner ear (I think that’s what she said?).

    Anyway, Alice also needs a general health check as part of the assessment, so we are sent for an ECG and to book a renal function test. Fortunately Alice sleeps throughout the ECG so we are done in no time.

    Back across the hospital to meet the CI Programme Manager who introduces us (formally) to the world of CIs. We finally get to see and touch one and to understand exactly what will be going on over the coming months. Fortunately, we are told, they no longer shave the hair around the ear, so Alice’s curls are safe for now! St. George’s use the Cochlear Nucleus system, so it is likely this is what Alice will end up with (not the prettiest thing in the world, but it will have to do)

    We book our appointments and are told that Alice will be done early in the new year (if the assessment goes well). Hopefully March, but possibly early April. (Dr. Ceranic told us February, but I suspect we hope for the best and plan for the worst).

    Alice, as ever, is the model patient – Four hours in hospital and barely a grumble from her. Phew.