It Hurts Me Too

I’ve just had a look back through my archives and have realised that I didn’t ever blog about a fairly major thing that happened with Elisha a couple of years ago.

From memory it all started in May 2008, when Brett and I both became concerned about Elisha’s left eye turning significantly when he was looking at close objects.

We took him to our local optometrist, who then referred us on to another optometrist and a paediatric ophthalmologist.  The wait for an appointment was quite a while.  I remember that we saw the optometrist first.  We’d decided to take Elisha for his appointment and then to Scitech as a special treat.  Well, he (the optometrist) thought he could see something wrong with Elisha’s eye, but wanted to get a closer look at it, and was going to have to dilate his pupils.  We made an appointment for later in the afternoon so that we could still go to Scitech.

I remember being at Scitech, but not really being there, worrying about what it might have been there in Elisha’s eye.

Eventually we went back, Elisha had the drops put in his eyes, and we wandered around for a while waiting for them to take effect.

The optometrist had seen something.

This is what a normal retina looks like…
normal

This is what Elisha’s looks like…
elishaseyesmaller

It is a very rare defect of the eye, called Wyburn-Mason syndrome.  Basically some of the blood vessels in the eye are thicker than they should be. Most of the people we dealt with had never seen it before, only Dr Lam had, and only once.  Which meant that they were all quite excited by it in some ways.

He had to have an MRI to make sure that it didn’t extend into his brain in areas that could cause problems.  It does go to his brain, but not into it, or not into any problematic places.

Elisha is never going to have great vision in this eye, but is also a little short-sighted, and has had glasses since he turned four.  He has also had to patch.  He HATES it.  H.A.T.E.S.  He is like two different people.  Elisha with no patch and Elisha with patch.

patch1

Last year we tried some drops instead of the patch, so that he couldn’t cheat by pulling the patch open a little bit.  He ended up having a reaction to the drops, and we stopped both those and the patching for a while.  When we started up again, his vision was worse than ever.  He even walked into things a couple of times when we first resumed.  ?As much as possible he sits in a chair and does nothing.

patch2

I feel awful making him do it, because I can see by his actions how much it upsets him.  Yet, it is for his (hopefully) long term benefit that we are pursuing it.  I pray with him about it, and we had a big talk about it this last week.  And he actually got off his chair and did a few things…

patch3

… including taking his bowl to the kitchen!  I pray and hope that the wearing of the patch will improve his vision, and also that it teaches Elisha about persevering through tough circumstances.

4 thoughts on “It Hurts Me Too”

  1. Oh Tara, that’s a huge thing for you all to be worrying about. Poor Elisha. I hope your prayers and those of others (including me) make a big difference. x x

  2. Hi there, I always come by your blog when you comment and I just wanted to say that one of my kids developed a sudden squint from one hour to the next the day after he turned three and had his first glasses within the week… And then we began the long arduous journey of patching until he was about nine. he needed to be patched half the time… initially we did it half the day and later every other day. It helped to use kid friendly patches the really fitted better and if I couldn’t get patches with pictures I would draw them. Otherwise I would put them on just before he did something he really really wanted to do – even putting on a movie for half an hour or so… it was really hard work to keep him engaged in what he was doing long enough to forget the patch. At first it was awful he had headaches and just generally felt awful… it was really exhausting for him. But eventually he got pretty good at it and it really paid off in the long run – with good enough vision in both eyes even if they don’t track together. When he eventually was old enough to stop patching the eye-specialist was impressed with his vision and mentioned that he never thought he would be able see in the weaker eye at all. So hang in there – it will pay off but it is tough to get through it!!! I thought you might just want a tiny bit of encouragement from someone who has been there and survived!!!

    1. Se7en, thank you so much for taking the time to share your story with us. It is so good to hear a success story! Time to lift my game, and get a bit more serious about it. Will have to think of some more rewards for his hard work.

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