Our visit to Moorfields

We are lucky enough to attend Moorfields Eye Hospital for Jet’s care on a regular basis. When we went on Tuesday, my mum looked after Stella and Chris, Jet and I were able to go on an adventure together, which made it feel exciting for him. He has been going since he was tiny, but this was the first trip where he has really been aware of what’s going on properly.20150421_09415220150421_094237

The journey started with a train ride, always a winner in the life of a three year old boy! Upon arriving at Old Street station, there is a green line painted on the ground which you are able to follow to the main hospital. Jet enjoyed walking on this, until we turned off the main road and onto Peerless Street where you find the Paediatric department, housed in a separate building.
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It is fantastic, because the place is really well set up with entertainments for the children, so you face the inevitable wait that comes with any hospital visit knowing that they’re well catered for in the fun department. They even have playworkers who instigate activities and make sure everything runs smoothly. Jet buzzed around in his usual fashion, making friends, playing, crafting and taking some time out to watch a DVD.

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We saw the Orthoptist, who looks at how his eyes move. It is brilliant how child friendly they are able to make everything, with little animal shaped torches, flashing sensory toys, and picture symbols rather than letter charts to gauge what he can see and how well. Jet enjoyed identifying the pictures where he could, amusingly calling the house a toy box every single time it came up, and naming anything he couldn’t really make out a ‘handle’ for some unknown reason πŸ™‚ .Β She explained that currently his vision is one below what is required to pass your driving test, but that this is really quite good for someone with his eye condition (nystagmus), and recommended that we had the glasses test whilst we were there. This is where he has to have some drops to dilate his pupils which sting when they are put in and make his eyes unable to regulate how much light enters them. As Jet already struggles in bright sunlight, I never really look forward to this part, but we had been out the day before and got him some new sunnies. He was really chuffed with them and kept declaring to everyone that he looked “really funky”, although he did manage to leave them on the colouring table at one point…

We had to hang around for a while after the drops had been put in, and it was lunchtime by this point. It is hard to hang around in the hospital for a long time, despite the excellent play facilities, as the whole experience is very tiring for the children and Jet would usually be asleep in the afternoon, given the choice. But it takes time for the drops to take effect. You can see how tired he looks, and how puffy his eyes are in this picture. After a while, we were seen again by a registrar and the consultant in charge of the clinic.

20150421_125835I find this hard to understand, but despite the fact he has low vision, he doesn’t need glasses. This is because his vision is limited by the movement of his eyes, which cannot be corrected in any way, including lenses. We have been referred to the Low Vision Aids department, who will talk us through the resources and technology that may help Jet access things as he gets to school age, and we were introduced to one of the family liaison people who recommended I check out theΒ Nystagmus NetworkΒ for information and support. I have known about this organisation for a while, but as yet I haven’t felt it necessary to use it, as I don’t feel Jet is being affected by his condition at the moment. Also, we have my dad to ask when questions do arise. But it is good to know that it is there.

By the time we left, we had been at the hospital for about four hours. He kept saying that his eyes were going all funny, because the effect of drops lasts for several hours. I was glad he had his sunnies – it was very bright on our journey home. We sat on the train and he said he wanted a rest and lay down on the seats. By the time we got home though, he wanted to go out in the garden and play with his sister in the shade.

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4 thoughts on “Our visit to Moorfields

  1. I’ve had Keratoconus my whole life and my eye surgeon said that theoretically i should not be able to make much sense of the world – yet here i am working, writing and doing art. Its amazing what the brain can adjust to if you have the right attitude because it will let you see. Hence the fact he currently does not need glasses ☺ He will be fine in this attitude because you are his parents ☺ Greg

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    1. Hi Greg,
      Thanks for your comment. I have taken a particular interest in your blog because I like to see how you approach everything, given the fact that you have keratoconus. I appreciate you sharing your perspective, thanks for giving me an insight into your strategies for approaching your artwork. πŸ™‚

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  2. πŸ™‚ To be honest, we all live the reality bequeathed to us. For me blurred vision is normal and has been most of my life. So it is no hardship. What concerns me is when I see people treated differently – treated like they need help, are inferior or alternatively are special because they have something like this. I know several people with exactly the same degree of vision as myself who live on Social Security instead of working, who make excuses the norm rather than the exception. My opinion, whether I be right or wrong, is that people live up to the expectations that others hold of them regardless of any disorder or lack of one. Treat someone like they are incapable and then they will be incapable. Treat them like they can do anything and they will strive to do their best πŸ™‚ The other key thing is a sense of humour. It’s amazing how someone can get through an ordeal if they can laugh.

    This said, I am as chuffed as Jet with his sunnies that you find something useful in my blog πŸ™‚ I say this because I am genuinely embarrassed when I talk about my Keratoconus and only speak about it in posts now because of a huge amount of interest generated when I mentioned it earlier. Why am I embarrassed? Because I don’t like to give myself excuses. To know that this little bit of embarrassment on my part is helping someone means a lot.

    best wishes πŸ™‚

    Greg

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