Little Alice

Alice is the sort of daughter to make any father proud.

Not only is she incredibly beautiful (credit to her mummy there) but she is a real joy to be around. Always happy and smiling and she has a laugh that could make even Gordon Brown smile. That’s not to say she doesn’t have her moments. Alice is a determined little so-and-so and has a naughty streak that even her brother would be proud of.

It is so very hard to reconcile this normal, inquisitive, bright and beautiful young lady with her world of silence. The thing that breaks our hearts more than anything is that when she cries, whether it be because she has hurt herself or she is just a bit sad, you can’t comfort her in the way you would any other child. You can hold her, cuddle her, stroke her but you can’t tell her everything is ok in the way we can her brother.

It is such a torment for a parent knowing that she can’t hear us when we tell her we love her. Of course, we make up for it in many other ways.

As her Daddy, one of the first things I said to Alice’s Mummy when we found out she couldn’t hear was that all I wanted was to hear her say ‘Daddy’. Such a small thing and probably entirely selfish, but it is the small things that make the biggest difference.

Somewhere in Alice is a voice and I have no doubt a wonderful one at that. If she has a CI and performs very well, will I ever hear this voice or will she always struggle to talk in the way God intended?

Whatever the outcome, we never want Alice to be frustrated by her problem and, even at her tender age, this is starting to creep in. Communication is something we all take for granted. It is a basic instinct and you can see it in her eyes sometimes that she doesn’t understand why she can’t communicate in the way that we and her brother can.

Bless her big brother Joseph. He knows Alice’s ears don’t work and even at 3, you can see he wants to help. He has been learning some of the basic cues and tries so hard to help Alice to understand.

It is a humbling experience and I am the proudest Daddy in the world.

I Love It When a Plan Comes Together!

7th November 2008 – 11th November 2008

After a whole day of talking about Alice (not a difficult thing to do given how wonderful she is) we sleep (very well I might add) on what to do next.

Do we go down the GoSH route or stick with David Sevadurai at St. George’s? GoSH have performed some 300 CI surgeries and are the centre of excellence in the South of England and the St. George’s CI programme only 20. Heart or Head?

Fortunately, both our hearts and our heads tell us that David is the right man for the job.

We email David and Wendy at St. George’s to let them know of our decision and also to seek their advice on the EEABR/EABR and Otoferlin tests.

David replies on Friday evening (like I said before – does this man never rest) whilst I am sitting in my usual haunt of the Red Rose Indian Restaurant in Surbiton awaiting a takeaway.

I’m not sure Roki, who runs the restaurant, is used to an in-his-thirties man sitting at his bar crying. David is delighted we have chosen to go with him, but one thing he said will stick with me for a long time ” I will always strive to achieve the best outcome for Alice, and you”. Not a difficult thing to say, but to us both, it meant the world.

Several emails later and the process seems to be underway. We are just awaiting the details of the first appointment on what will, no doubt, be a lengthy assessment process. David is busy speaking to experts around the world to seek opinion on whether EEABR / EABR is worthwhile given the good results from the MRI. At this stage, he feels not.

Just to top it off, we receive news from Tony Sirimanna that he feels Alice’s inconsistent VRA results could be because of an “abnormality of the neurotransmitter that normally flows from the hair cells across the synaptic cleft to the nerve endings. It is just supposition that perhaps while there is enough transmitter she hears better, but once depleted she doesn’t hear as well for a while”

It’s all Greek to me but sounds plausible – David agrees, but reminds us this is only a theory and will have no impact on her CI outcome as the CI bypasses this junction anyway. Dr. Wendy also agrees that it is worthwhile pursuing the Otoferlin tests.

We are getting somewhere. We are both happy.

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