Livy has had her glasses for over a week now, and we cannot believe how well she has taken to her another new addition!
Livy has a convergent squint, a form of strabismus in which one of her eyes deviate inward she also has a horizontal nystagmus, a condition where the eyes move rapidly and uncontrollably. In addition to Nystagmus people can also have movements of: up and down (vertical nystagmus) in a circle (rotary nystagmus). Livy’s conditions only affect her right eye.
Her vision in the right eye is 6/60 which is quite a significant loss and 6/18 in her left.
Distance acuity is the measurement taken when we read an eye-chart on a wall when we visit an eye specialist. The measurement is expressed as a fraction. The numerator (top figure) represents the measuring distance and the denominator (bottom figure) represents the size of the letter that can be identified at that distance. The smaller the fraction, the worse the vision. So, an acuity of 6/48 is worse than an acuity of 6/18.
I have been spending some time trying to understand the depths of Livy’s visual difficulties. I understand her vision in the left eye is classified as low vision. And her right eye is actually perceived to be legal blindness.
It’s incredible she has gone for so long with such minimal vision and whilst she’s no stranger to presenting with challenging behaviours, I have created a bigger picture now. How disorienting and frustrating it must be with low vision and no hearing.
Yesterday she had a check up with her ophthalmologist team to ensure the glasses were correctly fitted and whether her right eye was responding well.
Her eye is definitely straightening with the help of the glasses and she sat throughout the test really well! She may need patching in a couple of months time.
However, she is doing incredible, adapting to the glasses and there’s strong hope within the team that her eyes can be taken care off locally rather than a referral to Leicester Hospital.
We noticed yesterday, the team was in pink tunics, this made such a significant impact on Livy’s medical related trauma induced anxiety! She was only hesitant for a short time before forming into the bouncing ball of energy that we all know and love about her.