Forever is a Really Long Time

It’s been a while since I last posted, mostly because there’s been nothing new to report, but also because it’s taken us a while to process the things that have been worth reporting. Josh had some complications following his surgery last June, which I’ll get into another time. For now I want to talk about our newest battle…

One of the risks associated with Aphakia (no lenses) is increased intra-ocular pressure, which left untreated can lead to glaucoma. There are a couple of different types of glaucoma but basically the high pressure in the eye damages the optic nerve and the eye sight deteriorates as a result. We always knew it was a risk and at all of Josh’s routine eye check ups the doctor tests the pressure in each eye. It’s always been normal, until November, when it was elevated enough in his right eye to cause concern. Our PO prescribed an eye drop to be used once a day to bring the pressure back down, and we had a few visits very close together to keep monitoring it. Fortunately it went down, but we were advised to continue using the drops. We had another appointment yesterday, and the pressure was slightly elevated again. We had been away and forgot to take the drops with us so we’d missed a few doses. The fact that the pressure was elevated again told us two things – One, that the drops are very effective, and two, that Josh will need to use them indefinitely. There will be times, like last week, when we can do a controlled break from them, just to make sure he still needs them. But for the rest of his life Josh will face this risk, and he will always need something to control it. Forever. It was a stark reminder that this isn’t going to go away, and it isn’t going to get any better. 

We are fortunate that the drops are working for now. There are other ways to manage elevated eye pressure, and some of them are a lot less pleasant, so we’re hoping the drops continue to be enough for quite some time. We’re also considering trying contact lenses again. They will help him to better develop his peripheral vision. Because his glasses are so thick they tend to distort what he sees out the sides, and he turns his head to see, rather than moving his eyes. With contacts there is less distortion, and we still have a limited window of opportunity to help him develop his eyesight. Unfortunately we’d need to take the contact out every night in order to put the drops in so it’s a decision we really have to think about. 

For now, Josh continues to be oblivious to it all. He takes the eye drops in his stride (with a lot of help from daily rewards!) and wears his glasses without complaint. He also treats them very carefully, for which we are very lucky and grateful! It’s easy to forget that our little man is facing such enormous hurdles, but most days we take our cues from him, and just get on with it. Because, as Josh says, forever is a really long time. 

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4 thoughts on “Forever is a Really Long Time

  1. Hello! I have been reading your story of your precious little boy. My son, Nathan had ectopia Lentis as well and last June and July had a Vitrectomy and Lensectomy on both his eyes. My son has a very rare condition called Homocystinuria…a metabolic disease where his body is lacking the enzyme to break down proteins. This causes a toxic buildup in his blood and urine and causes drastic complications including dislocation of his lenses. He had Artisan lenses put in(infront of his Iris) and his vision is now near perfect. Will your son’s eyes stay Aphakic or will he eventually have synthetic lenses put in? Good luck to your little boy!

    • Hi Marian, I only just found this comment so I apologise for the delayed response! Thanks for sharing your story. Josh was tested for Homocystinuria when they first found the ectopia lentis but in his case it is an isolated condition. He will eventually have artificial lenses implanted, hopefully as a teenager but his ectopic pupils make it a little challenging. So glad to hear your son has great vision now. Thank you so much for your comments.

  2. Hi, How is Josh doing now? My 2.3 years old daughter underwent lensectomy for her right eye few days back and we’re planning for the left eye in a week’s time.

    • Hi GP, Josh is doing really well. It’s been two years since his second lensectomy and we can see it was the right thing to do. His vision has been stable since then and he is managing at school without any assistance. We can’t comvince him to wear contacts anymore but he is happy in his glasses and has no issues. I hope all goes well for your daughter too.

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