We've been at Great Ormond Street Hospital today for a routine checkup for Charlotte. For various reasons, I've been dreading it for ages but, thankfully, it was nothing like as bad as I expected; and the news was even slightly more positive than I expected.
Firstly, it seems that the ERG test that Charlotte first had when she visited won't be repeated. This is the more painful one with the flashing strobe light and apparently it is used to diagnose other conditions that have now been ruled out for her. So the test that she now continues to have involves looking at a screen of moving black and white squares while they measure her brain activity. The most painful thing about that test is the pain all the adults in the room have: trying to get a toddler to wear electrodes, wires and a stretchy bandage to hold it all in place without pulling the whole thing off her head; and then getting said toddler to look at the damn screen long enough for them to get any meaningful readings. But we got there in the end!
The good news is that her rod function is still normal. Phew! AND... she might even have some faint cone activity. Whoo hoo! I'm not getting my hopes up but any cones are better than none at all. She might be an incomplete Achromat. Like everything else here, time will tell and life goes on regardless.
I wasn't that keen on the Dr who saw us, she is a fellow of our main Ophthalmologist (whom I really like) but in the NHS, you don't always get to see the consultant but one of their underlings. She didn't seem to handle our questions very well and it kind of felt like we knew more about Achromatopsia than she did. I think it was down to lack of communication rather than lack of knowledge but it might as well have been the same thing. At least we are not new to all this any more.
We'll be back at GOSH in a year or more. Fine with me, I'm in no rush to go there ever again. It is so heartbreaking seeing the children there. I've learned that the larger and more complicated the wheelchair, the harder I need to try to not look inside. :.(
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Yay for some cones! Rocco is a complete achromat, but rest assured one day these hospital visits will be a distant memory and all you will have are yearly opthalmologist visits. Sometimes we feel so lucky that Rocco is so healthy, especially when I see children with terminal illnesses. It's very eye opening. Couldn't help the pun.
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