I promised after the December EUA that I would post even if Aaron was doing well. Reality is that this is really hard, both because there's nothing to write about Aaron that's relevant for the blog (that's a good thing) and because the news articles that come up on Google are either about someone who's blind from congenital glaucoma or aren't really saying anything new (in my unprofessional opinion).
However, I came across an interesting TED Talk called Design with the Blind in Mind. (NB: Aaron's vision right now is great but if you've read my previous posts then you'll know I like to prepare for things going awry so I occasionally do research on what life is like with partial or complete vision loss).
The talk was especially interesting to me a) because it gave good perspective on what things could be like for someone who loses their sight later in life and b) because my husband and I both work in the design industry. The speaker, Chris Downey, talks about how thoughtful design is beneficial for everyone whether they have limited sight or not. I couldn't agree more. (Chris is an architect who lost his sight after successful removal of a brain tumour, btw.)
Link to the talk is here if you fancy watching.
Friday, 24 February 2017
Four months post 360 degree trabeculotomy - so far so good
Ok, so I don't want to jinx things here but we had a really good appointment yesterday at Moorfields. We haven't been in since Aaron's EUA in December and it's been a solid four months since the 360 degree trabeculotomy. For the most part have been really comfortable with how his vision seems to be progressing (save one scary weekend where he had a cold and we were convinced his pressure was going up again - we spoke to Mr. Brookes about this at the clinic and he said eye pressure actually can go up when you have a cold and that's normal).
We went through the standard Thursday clinic procedures, which started with a visit to the orthoptist to check Aaron's eye movement. She showed him a series of lightly coloured cards with animals and vehicles printed on them in a slightly lighter tint. Very different to the whiz bang brightly coloured toys he's used to playing with but he seemed to be tracking everything. She covered each of his eyes individually (which he disliked in equal measure) and did a few other tests before sending us back up to see Mr. Brookes. The waiting area for the clinic is full of toys, which Aaron is almost old enough to play with, but he was far more interested in the polished concrete pylons and the interesting textures. He spent a solid five minutes smacking these and then chased a newspaper up and down the bench. Who needs toys?!
When we were called, Aaron gave Mr. Brookes the serious stare down that is his standard (no one is exempt, not even me) and then broke into a grin. The appointment itself was pretty quick as Aaron's eyes are nice and clear, which is visible from a distance, and the pressure in his eyes came out as 11 in the left and 14 in the right. A bit higher than after the EUA but Mr. Brookes wasn't concerned. He did a few other tests on Aaron and we got to leave with no changes to the current plan - no eye drops, no patches. Thank goodness for that!
Next appointment is end of April and we'll see an optometrist then to assess whether Aaron is short sighted, etc. along with another visit to the orthoptist and Mr. Brookes.
So fingers crossed. I'm one of those 'plan for the worst, hope for the best' people and once you have something like congenital glaucoma happen to your child (seriously, 1 in 10,000 babies! how did we get here?) you just assume bad things might continue to happen. That said, I know how incredibly lucky we are that Aaron could have the 360 degree trabeculotomy in the first place. And Mr. Brookes said that to have this continued success this long after the surgery is a positive sign. Trying to focus on good things based on this so I'm going to keep picturing Aaron's face when he sees his first birthday cake in a few months :)
We went through the standard Thursday clinic procedures, which started with a visit to the orthoptist to check Aaron's eye movement. She showed him a series of lightly coloured cards with animals and vehicles printed on them in a slightly lighter tint. Very different to the whiz bang brightly coloured toys he's used to playing with but he seemed to be tracking everything. She covered each of his eyes individually (which he disliked in equal measure) and did a few other tests before sending us back up to see Mr. Brookes. The waiting area for the clinic is full of toys, which Aaron is almost old enough to play with, but he was far more interested in the polished concrete pylons and the interesting textures. He spent a solid five minutes smacking these and then chased a newspaper up and down the bench. Who needs toys?!
When we were called, Aaron gave Mr. Brookes the serious stare down that is his standard (no one is exempt, not even me) and then broke into a grin. The appointment itself was pretty quick as Aaron's eyes are nice and clear, which is visible from a distance, and the pressure in his eyes came out as 11 in the left and 14 in the right. A bit higher than after the EUA but Mr. Brookes wasn't concerned. He did a few other tests on Aaron and we got to leave with no changes to the current plan - no eye drops, no patches. Thank goodness for that!
Next appointment is end of April and we'll see an optometrist then to assess whether Aaron is short sighted, etc. along with another visit to the orthoptist and Mr. Brookes.
So fingers crossed. I'm one of those 'plan for the worst, hope for the best' people and once you have something like congenital glaucoma happen to your child (seriously, 1 in 10,000 babies! how did we get here?) you just assume bad things might continue to happen. That said, I know how incredibly lucky we are that Aaron could have the 360 degree trabeculotomy in the first place. And Mr. Brookes said that to have this continued success this long after the surgery is a positive sign. Trying to focus on good things based on this so I'm going to keep picturing Aaron's face when he sees his first birthday cake in a few months :)
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