Tuesday, 30 July 2013

Doctors, Where are you?

Two years ago we were living in the Falkland Islands and we had a little baby girl.  (Fab place to have a baby, she was the only one born in the hospital in June!)  When she was about three months old I mentioned to the Health Visitor that her eyes always seemed to be moving - she never seemed to fix them in place.  Being thousands of miles away from eye specialist we were referred to Oxford for eye tests and were dramatically medi-vacced back to the UK a month later.  (Not really all that dramatic, but it sounds good).
My parents hired a cottage near the hospital for us to stay in and ferried me and baby girl back and forth.  We had a day of tests - because we had come so far they made sure they fitted everything in the same day, but it was quite overwhelming.  During many Opth.. somethings sessions - first showing baby cards and flashy coloured lights to see where she looked, holding up lenses in front of her (I think that was opticians) and the lovely doctor who jumped us from appointment to appointment - I was told casually:  "With the Albinism, the Nystagmus is fairly standard..."  "The What?" I asked, startled.  "Oh," said the doctor.  "Haven't you heard that before?  In that case, we'll talk about it when we've completed all the tests..."  Apparently to them it was obvious my little girl had Albinism.  It had never occurred to me - all my children are blond.
There was a particular test the doctor wanted to run in another department, but she wasn't sure if they would be able to fit us in that day.  It seems the consultant then called in a favour, and we were sent up an hour later to have electrodes fitted to baby's head and lights flashed in her eyes.  Not the most successful enterprise - how do you explain to a four month old that they really need to keep their eyes open, despite the horrible flashing lights.  However, it was clear enough to suggest that yes, Daughter 3 has the non-crossing nerves typical of people with Albinism.  As you can tell my grasp of the pertinent details and doctor jargon is pretty low!
And thus began our adventure.
Yesterday was our sixth visit to the Eye Doctor - now referred to Cardiff - and despite my continuing lack of understanding of the technical elements, I'm fairly happy.  As it's the school holidays all five children were with us, which was surprisingly civilised as there is an excellent play area in the waiting room and plenty of other children for my ultra-sociable tribe to befriend.  This is all the more remarkable when you realise that the appointment consists of three separate assessments over two hours.
Daughter 3 was also remarkably cooperative - she has a slight obsession with doctors, since recently we seem to be taking one or other child to the GP most weeks.  This was her doctor, and she was very excited.  Forgive the next few lines - I'm going to brag.  She responded to the cards with pictures on without getting too distracted, and then in the second assessment sat quietly in the chair by herself while the doctor shone lights in her eyes and wrote notes.  She didn't even cry when he put the drops in her eyes to dilate her pupils.
Then back out to wait for half an hour for the drops to do their job.  At this point we realised she had the most disgusting nappy, so it was just as well we had some time to deal with it.  On the way back from the toilet, I said, "Back to the doctors now."  At which point she started shouting at the top of her lungs.  "Where Doctors?  Doctors where you?  Doctors where are you?"  When we went back into the clinic, she wanted to go straight back to the doctor and had a minor meltdown when she realised she had to wait.  "MY Doctor!  My see Doctor!  Now!"  I'm a dab hand at ignoring tantrums now - she soon quiets if you don't fuss - and after a minute or two she went back to playing.
It was more than a half hour wait - it always is - during which time my eldest two competed in telling us that the clock had moved yet again and Son 1 repeatedly informed me he was hungry.  (BTW, I must start learning to accept that boys are always hungry.)
Finally, we went back to see the doctor, and once again, Daughter 3 was a little angel!  Sitting on her chair, looking through the lenses at the light with only occasional hesitation.  Then - and this is where I'm really going to brag - the doctor brought forward the scope with the little chin plate, and hesitantly asked me if I thought she would put her chin on the plate.  At which point without any prompting she stood up on the chair, leaned forward and put her chin on the plate.  Clever girl!
When that was finished, so was she...  She wasn't interested in the doctor talking to mummy about the new glasses she would get, so I missed most of what he said.  I asked if these ones would be tinted, and he said we could just keep on using our other tinted ones for outside, as she'd need ones for inside that weren't tinted.  "We don't have any tinted glasses," I said.  "Oh, then we'll make these ones tinted, and you can use her old pair for indoors!"  Joy.
So, now she will have some cool dark glasses to impress everyone with, to go with her startlingly white hair.


  1. Oh Nicola, you have no idea how envious I am of you right now. We have had the pleasure of seeing the eye doctor every 3 months, and I think up until the last time every single time was hell. Yon used to start crying when he saw the building! He hates the drops and the lights and that electrodes test was the worst 3 hours ever...
    I am rambling, anyway glad to hear everything went well, and you got new tinted glasses!

    1. I did think of you as I wrote this, Orli - I know your experience has not been great. We have been fortunate to have things mostly go smoothly and the team at Cardiff are very good with the kids. Yesterday was an exceptionally positive experience from the children's perspective - and intriguing as there was another little girl 'who looked like Charlie' in my daughter's words. I did feel the doctors were a little hurried with us at the end, and just kind of gave into the 'give us tinted glasses' request, because they wanted to finish the clinic! Good thing we didn't have any real questions any more - I just see it as a process we have to go through and my only real aim was to get the tinted glasses! I hope your next experience at the hospital is more positive.

  2. Well done to my gorgeous niece number 3!


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