Category Archives: Adventures in Squint Correction

Patchy

Jamie had his latest orthoptist appointment last Wednesday.  I must confess here that I'm actually an appointment behind, since he had one in, oh, probably about last March that I never got round to recording here.  Not that there was much to say about that one, but it was the next one after the September appointment in which we had been advised we could try stopping the patching again, and the appointments after no-patch periods are inevitably tense moments as we wait to see whether we can continue with the non-patching or whether it will have led to Jamie's weaker eye deteriorating and whether we'll have to start up again.  Fortunately, at the March appointment, the former was the case – the orthoptist (a different one from usual) declared Jamie's eyes in good enough condition to remain a patch-free zone, and I got to breathe easy again. 

Having done my tenterhook-hanging on that occasion, I didn't worry about this one at all, having rather foolishly assumed it would be a mere formality; I was therefore a touch blindsided (if you'll pardon the unintentional pun) when Barry reported back to me that we're now back on the patching regime again.  For two hours a day.  Oh, well – it's going fairly well for the time being.  Jamie does still pull glasses and patch off pretty frequently but submits to having it put back on again, so we seem to be OK as long as we keep a close watch on him.  With a bit of luck we should get it down to an hour a day by his appointment next September, which would be good considering he'll have started school by then and we'll have that much less time each weekday available for patching.

Speaking of appointments I didn't blog about, there was also his last appointment with Dr M., which in fact wasn't with Dr M. when it came to the point – that one was Friday 6th February, which turned out to be the end of a week of country-paralysingly heavy snow, and Dr M. ended up getting stuck in the nearby city with all the clinic notes.  His clinic was thus taken that day by Dr H., a colleague of his armed with only the brief summaries on each patient that Dr M. had managed to pass on to her in a hasty phone call.  In Jamie's case, the brief summary was apparently that his ASD had been diagnosed last August and that I was a GP.  Dr H. was a cheerfully breezy woman who was quite a contrast to Dr M. in personality – she reminded me of an enthusiastic and good-natured headmistress – but she was just as pleasant as him, and took Jamie's climbs all over the consulting room (not the formalin-smelling one on this occasion, at least) in good part.  She asked us about his sleep and eating and the progression of his toilet training and various other things which I forget, talked about getting him statemented for school, and recommended some parent training days on autism which neither of us have actually got round to getting to at any point.  That was about it.  We now have a slew of school-related stuff coming up this Thursday, so at least I'm briefly up to date on my reporting of appointments before falling behind again.

And now, dear readers, I seek your input.  I always meant to set up a specific category for autism-related blog posts as soon as Jamie's diagnosis was formalised, but never actually got round to it until, well, now.  So, given my penchant for obscure and quirky category names… what should I call this one?  I'd like to go for 'Spectral' (as in autistic spectrum disorder – geddit?), but that might be too obscure for people visiting the blog.  'Adventures in Autism' might be good if I hadn't already gone with that theme for the category of squint-related posts, but, given that I already do have a similarly-named category, I fear it would look repetitive.  Should I go with 'Spectral'?  Or does anyone have any other ideas?  And, while we're on the topic, do my current categories make any sort of sense to anyone apart from me, if the answer to that one is 'No' then is anyone troubled by that, and would anyone like a 'Guide to Sarah's Bloggy Categories' post at any point?

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Checks (and possibly even balances)

Update on the latest of the perennial assessments of various aspects of the children:

10th September was Jamie's latest orthoptist appointment.  It was a joint appointment with the ophthalmologist, which meant it was on a different day of the week from usual and hence at a time when I was at work and had to leave this one to Barry.  As much as I love being involved in every detail of my children's various assessments, not being at this one did have the advantage of sparing me a confession; my excellent intentions of persevering with the patch had almost completely gone by the wayside, for the simple practical reason that getting him to keep it on for more than a second or two is now a feat of near-impossibility.  He can rip it off faster than I can replace it, and more often.  Since this involves pulling his glasses off as well, and he doesn't put them back on after ripping the patch off them, this means that putting the patch on him was not only not resulting in him wearing it; it was resulting in him spending less time wearing his glasses.  Since correcting his vision is also important for keeping his left eye working (if he can't see as well out of that eye, his brain is more likely to tune out the image), my attempts to patch him were actually backfiring as far as his future visual acuity was concerned. 

Of course, I could have tried harder.  I could have found time to hover over him intensively, putting every effort into stopping him from removing it and distracting him onto other things.  While doing this for the prescribed hour a day would simply not have been possible short of leaving Katie to fend for herself during that time, I could have managed a bit more than I did.  Mea culpa; I gave up on trying.  Pat had, after all, initially said that we could have a go of not using it for a bit; how important could it really be?  I was, it seemed, about to find out. So I awaited the verdict from the appointment with some trepidation. 

The verdict, fortunately, was favourable; I'd made the right choice.  His left eye was still doing OK, and we could move from dispensing with the patching unofficially to dispensing with it officially.  We have also been told that his lens prescription has changed.  This may account, at least in part, for the fact that he has recently developed the habit of taking his glasses off all the time, even when we're not trying to patch him.  This has also been rather a problem given that when he takes them off he tends to chew the nosepieces – those little rubbery translucent things that cushion the seat of the frames on his nose, due to child-shaped noses not holding spectacles as well as adult-shaped noses.  When they're chewed, they often come off (or split).  So we spend a lot of time groping round on the floor trying to find missing nosepieces, or making trips to the opticians for spares.  Fortunately, getting his new glasses does seem to have diminished his tendency to do this at least somewhat.  (And who cares?  We no longer have to put eyepatches on him!  Hooray!)

The other recent assessment-type thingy was Katie's eight-month check-up (at least, I think that's what it was officially called, although she was more like nine months and change by then), which was on September 16th.  I hadn't realised that eight-month checks still existed locally – I'd thought that they'd gone the way of the three-year checks, into the black hole of Insufficient Funding.  However, it seems they've survived, although somewhat abbreviated from what I vaguely remember them being back in the days when I had to learn about them for the MRCGP.  It pretty much consisted of the health visitor putting a couple of small cubes down on the table in front of Katie to observe her reaction.  Katie duly grabbed them and played with them appropriately, demonstrating such behaviours as hand-to-hand transferring and whichever type of grasp it is that babies learn just before learning pincer grasp (there's an official name for it, but I've forgotten it), and was pronounced in fine shape developmentally. 

"With Jamie in mind," Carol added, "her looking for approval is absolutely spot on."  I'm not keen on that particular phrase – 'looking for approval' has undesirable connotations of being excessively dependent on the opinions of others – but, in this context, it refers to the way a child will look up at the adult interacting with them, checking in, sharing the experience. One of the many clues to Jamie's ASD diagnosis was that he did very little of this during his assessment with her.  The fact that Katie does do this is a significant sign that – as we already thought – she probably doesn't have ASD.

Carol asked us if we had any concerns (we did not), gave me a copy of the Edinburgh Postnatal Depression Scale to fill in (it's a screening test for postnatal depression), and gave Katie a bag of books from Bookstart, which Jamie immediately ransacked.  (He found a laminated placemat with nursery rhymes on it and promptly started reading them aloud, to Carol's surprise – she was impressed with his reading skills.)  We then went out to the main waiting room and weighed Katie, who is now approximately 19 lb 10 oz, or approximately 8.88 kg if you want to be metric about it.  You may notice that those figures aren't even exact conversions of each other, which gives you an idea of how approximate the weighing process was – getting an exact weight would have involved her sitting still for a minute, which was not really on the cards, plus I forgot to take her nappy off when I undressed her – but they're ballpark figures.  She is, in any event, still trekking comfortably up the 50th centile, her growth going as nicely as everything else.

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Insert eye-related title of your choice

I just remembered I didn't get a post up about Jamie's latest orthoptist appointment.  Not through lack of trying – I started writing one that same evening (it was on Tuesday just gone), and got half-way through when Typepad did one of its occasional crash-and-burns and lost the post.  Fortunately I hadn't written that much so it was no more than a minor annoyance, but, as I was falling asleep in my chair by then, I couldn't be bothered to start over and decided I'd do it the next day.  And then forgot, of course. 

Anyway, don't get too excited (oh, you weren't?  Oh, well), as I record it only for the sake of completeness; it could best be summarised as Same Stuff, Different Day.  The visual acuity in his squinting eye is still not quite as good as that in the other eye, but the difference is apparently minor and Pat now thinks that, rather than continually hoping that we'll be able to correct it with enough patching, we should accept that there is going to continue to be a difference and simply aim to maintain it at the level it's at.  She did float the possibility of taking another break from the patching, but, as much as I like that idea, I do have to face the fact that the last time we tried that his vision got worse and I do not want this to happen again.  So, following a bit of discussion, we both agreed that the patching should continue for now.  There is now some light at the end of this particular tunnel; Pat thinks that if we can stick to the patching assiduously enough now then we should be able to leave it for good by the time he starts school.  So we shall hang in there.

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Random acts of updating

I spoke to the nursery supervisor last Thursday to update her on the upcoming paediatric referral and the health visitor’s recommendation that we arrange more nursery time for Jamie.  As I’d thought, there are no sessions currently available apart from the one that happens to clash with his Tumbletots session, but she will have a word with the registration secretary and find out whether any places are coming up next term.  If not, I will try to get him some sessions somewhere else local, and she says that if that happens they will be happy to liaise with the other nursery. 

She mentioned something to the effect that there would most likely at some point be some kind of official meeting with all concerned in order to discuss how best to proceed with intervention, which surprised me a little as I was still thinking in terms of all this being a potential problem which might need something doing at some point in the future rather than an actual problem that required meetings to be taking place at this stage.  Still, I suppose that the different setting at nursery means that things that aren’t a problem in the home setting may become problems, and then of course it would be nice to pre-empt any potential problems at school.  I asked her how she thought he was doing generally, and she said that he clearly had a lot of strengths but he did have problems focusing on what people were saying and thus, if one of the nursery staff was telling the group to do something, it was often necessary for someone to come over to Jamie to make sure that he’d taken it in – he does seem to need more one-on-one help with that sort of thing. 

She also said that the other week, when the children were asked to get their coats on and Jamie didn’t seem to be taking it in, she’d tried him with a picture communication card that they used with one of the other children and that seemed to flick the lightswitch in his mind – aha, coat!  This makes her think that he takes things in visually better than he does auditorily (I’ve also noticed that he seems to have a strong visual memory.)  They’re going to be trying some Makaton sign language with the children and think that might be really helpful for getting instructions through to him.  That would be excellent, as I’ve been planning on trying signing with Katie – I was going to try BSL, but if Jamie’s going to learn some Makaton then I could teach Katie the same signs and maybe they can use them to each other once Katie’s a bit older.  She said she’ll see whether she can arrange a parent class for signing.  If not, then I remember Fiona saying she’s used it in teaching – I’ll have to get her to show me some signs.

Jamie had his latest orthoptist appointment on Tuesday.  His vision in the squinting eye is apparently still not quite optimal.  This came as no great surprise – having a new baby around does tend to distract one somewhat from details such as remembering the older child’s eyepatch.  There is also the practical problem that having a new baby divides life abruptly into things that can be done one-handed and things that can’t, and, although replacing glasses on a reluctant child who has just removed them is a wee bit borderline, it does on the whole tend towards the second category (depending heavily on the reluctance of said child).  Then, on top of all that, the left lens of his glasses somehow got scratched a few weeks back and this bothered him a lot when he had the patch on the other eye, thus meaning that he became more and more reluctant to wear it until he reached the point where he completely refused.  At this point I finally did what I should have done before and took the glasses to the opticians to order a new lens, but that all took a few days longer and meant yet more time without the patch.  So, all in all, I’m just pleased his eye wasn’t any worse than it is.  Anyway, same old same old – we continue with the two-hours-a-day patching regime (or as close an approximation as we feel we can get) and see Pat again in three months.

I have been similarly remiss in remembering to do the things I was supposed to be doing to encourage Katie’s foot to turn, but fortunately this does not seem to be a problem – as the final after-effects of being squished against my inner uterine wall wear off, her foot is returning quite nicely to the appropriate position.  I still sometimes notice it turning inwards, but not nearly as often.

Yesterday, we made the trip to Mothercare and bought Katie a bouncy chair so that she can watch the world go by from more optimum positions than formerly.  Bouncy chair technology seems to have moved on somewhat since I spent my geeky childhood perusing Mothercare catalogues – they used to be simple bits of canvas on wire frames, and now most of them seem to be all-singing all-dancing productions with bells and whistles on, probably literally.  We eschewed all the complicated ones that do things like vibrate the baby into submission or dazzle them with multicoloured whatsits and went, instead, for a simple and attractive design in pale green with a few soft objects dangling from the detachable bar over the top.  Katie seems to love it.  Now she can actually watch us while we’re having dinner, instead of being relegated to a cushion on the floor.

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In which I still fail to think of any sort of interesting title

Hell, this isn’t even an interesting post.  Still, I feel like writing something.  Besides, it’s Nablopomo again, so I’ve got an excuse.

Jamie had his orthoptist appointment today.  Everything is, it seems, much the same – Pat wants us still to continue with the two-hour-a-day patching regime.  This does not have even remotely the heart-plummeting effect that it would have had a couple of months ago, because the difference with the new patch design – the cloth one that fits over his glasses instead of needing to be stuck straight to his skin – has been awesome.  We did have to go through a few initial days of getting used to it and being very consistent about replacing it whenever he pulled it off, but, of course, that’s one hell of a lot easier to do with this design, since we can simply pop his glasses straight back on, patch and all, without having to go through the rigmarole of opening another one up.  And the rapidity with which he got used to it is remarkable.  While he needed to adjust to having his good eye covered again after the months of having it free, this patch really does seem a lot more comfortable for him.  Plus, the way it can be slipped on and off so easily means that it’s much easier just to put it on for a short time as and when we can.  One thing that was always awkward with the stick-on patches was that they could only be used once, and so I would find myself hanging on until I thought we could get the full time in one go rather than waste one.  Even on a one-hour-a-day patching regime, it can be surprisingly difficult to find a solid hour in a toddler’s day when they aren’t due to have a meal or a nap or go out anywhere and when you’re around and available to supervise them and prevent them ripping the patch off as soon as your back’s turned.  I wasted a lot of potential patch time waiting for the magic time slot that, in fact, didn’t come up all that often.  Now that it’s feasible for me just to slip his patch on any time we’ve got ten minutes to spare, I do so, and it adds up throughout the day – especially since, with our disorganised schedule, it’s amazing how often that ten minutes to spare actually turns out to be forty minutes of good patch time.

So, I am facing the prospect of two hours a day patching for the foreseeable future with more equanimity than I ever would have believed possible.  Which is just as well, because I think now we’re in this for the long haul.  Before, I could look forward to Jamie’s squint surgery and hope that maybe the improved alignment of his eyes would render the patches obsolete, but now that we know that hasn’t worked, there doesn’t seem to be a lot else we can do other than wait and see how it goes.  Pat assures me that he will eventually reach a stage of maturity where his brain maintains the vision in the squinting eye without regular patching being needed to force the issue, but it isn’t possible to make any predictions about how old he will be when this happens, so the patches are likely to be part of our lives for a good few years yet (even apart from the possibility of Katherine/Alfie needing them, something I have prepared myself for given that squints often run in families).

Progress report on everything else: Banisters – polished and ready to start going up tomorrow.  Paintwork – given final paint-&-grain coat.  Baby – still on the inside.  Contractions – still on and off but still more off than on.  Baby equipment – still waiting to be washed (the stuff that was in the loft needs cleaning over) but I’m hoping to get the Moses basket done tonight.  And that’s about all I got to say about that.

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Cross-eyed. Bears.

Any unexplained whooshing noise you happened to hear emanating from my neck of the woods around 6 p.m. on Wednesday just gone was probably the sound of my heart plummeting as my husband informed me, following Jamie’s ophthalmology appointment, that it has now been decreed that he is to go back to the daily eye patching routine.  Whoa!  Wasn’t this something that was merely being floated as a possibility for a comforting few months further down the line, with the prospect of all sorts of potential Jamie-maturation occurring in the meantime and the consequent hope that he might actually be capable of grasping the concept of this being something he needed to put up with in hopes of future benefits, rather than just a random parental-inflicted torture?  Well, apparently not – since the ophthalmologist has checked his eyes and confirmed that his lens prescription hasn’t changed and that his vision with his current glasses is as good as we’re going to get it, apparently the orthoptist concluded that there wasn’t any further point waiting to see how things went and that we should just restart the patching now.  While I was still attempting not to reel too much from this (patches?  Again?  Back to those struggles?  On top of having a new baby to deal with in a couple of months?), I heard Barry mentioning to his parents on the phone that we were also supposed to go back to the initial regime of two hours patching per day rather than the one hour to which we had grown accustomed, an additional blow of which I had been previously unaware.  I spent quite a lot of that evening grimly repeating to myself that Worse Things Happen.  Or trying not to think too much about it at all.

Fortunately, patching technology seems to have moved on somewhat in the months that we’ve spent out of the game.  Instead of having to stick disposable adhesive patches directly over the eye, we now have the option of a sort of cloth sleeve which we can slide over one lens of his glasses.  We tried this out last night, and, while I really do not want to jump the gun/tempt Fate/count chickens, I will very cautiously say that he does seem rather less bothered by this one.  He was still removing it unceremoniously and dumping the whole works, glasses and all, on the floor at regular intervals, but he did seem resigned to me promptly plonking it back on his face again each time with a reminder that glasses stay on, Jamie.  It just didn’t seem to cause him the same level of distress as having a patch stuck directly on his skin.  And, of course, since it’s a reusable patch, it’s a lot easier to put back on straight away than a disposable would be.  (I used to put several spare patches in my pocket at the beginning of each patching hour so that they would be handy for rapid replacement when the inevitable need arose. I would then forget about the unused ones until later on in the evening when I would empty my pockets of small change and the like prior to going to bed, find a crumpled patch or two still there, and be faced with the decision over whether they had crumpled to the point where it wasn’t really worth trying to get them to stick on Jamie’s face and therefore might as well be thrown away or whether we should try to salvage them.  I think I still have a few somewhere in the clutter on top of my chest of drawers.)  So, I am feeling very cautiously optimistic about the situation right now.

Meanwhile, the latest dispatch from nursery life is that apparently Jamie had a number 2 on his cup so he had to take two teddy bears, but Courtney had a number 5 on his cup so he (Jamie is still hazy on both pronouns and gender) had to take five teddy bears.  One cannot really dispute such logic.  I hope to find out more of the finer details about whatever this game is when he goes back for next week’s session, although, of course, there is always the possibility that Tinky Winky may choose to inform us on the subject in the meantime.

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Keeping an eye

A quickie (which I meant to post on Tuesday, but didn’t get around to it): Jamie had his latest appointment with the orthoptist on Tuesday morning.  All is going reasonably well, but she did notice that his vision was not quite as good in the squinting eye.  My heart sank when I heard this – back to patches? – but it seems that this is just something that we need to keep an eye on for now, rather than anything we need to do anything about right now. 

The first step is to make sure his lens prescription is up to date and hence that he can see things optimally with that eye when wearing his glasses – obviously, if this is the case, he’s more likely to use it.  He was supposed to have had an appointment with the ophthalmologist by now, but since this doesn’t seem to have been arranged Pat rang up and sorted one out for next week.  Following that, we can get him some new glasses (not a minute too soon – his are so scratched and bashed that we’re planning to get him a new pair even if it turns out his prescription hasn’t changed one iota), and then see how he does with those.  Pat has arranged to review him again herself on November 13th, which we felt gave us enough time before my late November due date that I was unlikely to need to hurry straight from the clinic to the labour ward, and we’ll see what we see then (or, more accurately, I suppose we’ll see what he sees then).  I was a little concerned in case this would end up with us starting a repatching regime at just the time that we were all having to adjust to a new baby, which didn’t sound easy from any point of view at all, but Pat assured me that we would still have leeway on the matter if need be.

I recognise this makes for a rather dull post, so I will pad it out with a quick Jamie anecdote.  My grandmother has just sent him a pack of cards.  (It seemed like rather an odd present to me, but presents are presents and I do not wish to seem ungrateful; and it does have numbers on, which is always a good feature for a Jamie present to have.)  Showing him the numbers, I realised I’d have to explain the lack of a 1 to him.  Jamie was quite taken by this explanation, and for the rest of the morning kept rather randomly repeating, on and off, with the great deliberation and emphasis that he brings to subjects of such seriousness, "Ten… nine… eight… seven… six… five… four… three… two… but there isn’t a number one!  Instead of a number one, there’s a letter A!"  I should have been more willing to trust my grandmother’s intuition – it might not be a very conventional present for a two-year-old, but he seems absolutely intrigued by it.

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Patchwork

We saw the opto-thingy on Tuesday and received the verdict we have been passionately hoping for for the last few months – No More Patches.  Not for now, anyway.  His vision continues fine in the left eye, he’s clearly using it a lot more since he had the surgery, and we now have official permission to try without patches and see how we get on. 

This is pretty much just formalising a decision that Jamie had already taken – keeping the patches on him for more than a few minutes has become next to impossible short of tying his hands down, a length to which I am not prepared to go, and so I can’t believe they were actually making much difference to his sight in any case – but it’s an incredible relief to have it made official.  Or will be once it’s sunk in – it’s still hard to believe, after a year, that this particular mini-ritual no longer has to be a part of our day.  No more struggling with the dilemma of whether I should interrupt a fun session of playing or reading together to stick on a patch that I know he’s supposed to have but also know he’ll hate.  No more trying to nudge him into opening the packet up (he insists on opening them up himself and will complain bitterly if anyone deprives him of the privilege, but once he has the thing in his hands ready to open he has a marked tendency to decide that opening it at some unspecified point in the future when he’s finished his book will do just fine, and it can take a lot of nudging to get him going).  No more hovering around ready to grab the patch he’s just ripped off and either try to straighten it enough to replace or slap another one on.  No more watching the clock and wondering how much longer I can distract him for.  Boy, oh, boy, I’m missing it all already.

Anyway, the appointment went much as usual – the pictures for Jamie to identify to test his vision, the singing unicorn that the opto-whatsit uses to check his focus at a distance (or something – I have no idea of the precise details behind the different tests she does), the machine with the slides for him to look at (ditto the above – all I know is that it looks like some bizarre throwback to the Victorian era.  With a chin rest.  And eyepieces.)  All much as before, except, of course, that now Jamie can talk.  This time around, he could name the pictures instead of just pointing.  I wasn’t at his last appointment, so this is the first one I’ve been to where this was the case.  Another reminder of how far he’s come with his speech in such a short time, and how good it is to be able to hear that little voice speaking up. 

We have another appointment with her in September, and she’s also arranging an appointment with the ophthalmologist (the doctor who specialises in eye problems, for those who were wondering) to check that his prescription is still correct.  Meanwhile?  No patches.  It still feels bizarre to know that I can stop having to worry about all that.

A lot of people seem to find this blog via searches for information on squints in children – in fact, without having done any official counts, I’d estimate that it’s the second most frequent way in which people find the blog.  (In case you’re interested, the third most frequent way is via searches on Gina Ford, and the most frequent is via searches on sleep training and CIO methods.)  With that in mind, I add two practical points here before I close. 

Firstly, if you’re here because you’re hoping to find out how the hell to get a toddler to keep his patches on – well, you’ll already have gathered from the above that I have no magic to share here, but one thing I can highly recommend, for those with broadband, is the Teletubbies website (mainly the Fun and Games link, but also Nursery Rhymes).  This distracted Jamie for many, many hours earlier in his patch-wearing days, with the bonus of giving him lots of stuff to look at and focus on with the eye that was meant to be getting the exercise.  The Night Garden site is probably worth checking out as well.  (And, you know – I never thought of it at the time, but do try Boohbahs, which my husband discovered years ago during general web browsing.  It kept him happy for ages.  If he’d had an eyepatch to distract himself from then he’d have been totally sorted.)

And, secondly, in case anyone wants to read the whole story of what might be involved in dealing with a child’s squint, I’ve set up a separate category for posts relating to the squint to enable people to do so easily.  You can get the category by clicking on the highlighted words in the last sentence, or in the category title in the list to your right.  For those unfamiliar with blogs and their layout, the posts are in reverse date order – once you’ve clicked on that category, scroll down to the last post on the page as your starting point and read them in reverse order.  Hope it’s of help, or at least of interest, to somebody.

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Eyes right

If I ever put photos of Jamie on the blog (incidentally, the reason I don’t has nothing to do with paranoia over child stalkers – I’m just too lazy busy to learn how to use the software for uploading photos from the digital camera onto the computer), then you might have noticed a difference in him in the past couple of months over and beyond the way that he’s shooting up.  Specifically, his left eye is now pointing in something much more closely resembling the direction in which his right eye is pointing.

We were quite surprised to get a call in March offering us a choice between two dates in April for his squint operation, since we hadn’t gone on the waiting list till December and had been told at the time that it would be six months; but it seemed we were in luck and, despite everything we’d heard about NHS waiting lists, we’d actually been one of the lucky families to get a wait shorter than we were expecting.  So, pleased at the thought of getting it over with, we booked the April 4th date.

When I blogged previously about our plans to get the surgery done, I was surprised to see another blogger talking about what a difficult decision this must have been.  Which made me feel quite a fraud – I have to admit that I really didn’t find it that difficult to decide that I’d prefer my son to have a minor, low-risk operation than to go through his childhood with a squint.  While I did have the odd fleeting moment of "Oh my god, what if this ends up being one of those stories you read about in women’s magazines where the mother talks about how she wasn’t worried about it beforehand and then it all went horribly wrong…?", my main concern as we came up to the time of the operation was how we were going to persuade a two-year-old that he couldn’t have anything to eat or drink when he got up in the morning.  To this concern, as the surgery date approached, was added the worry that they would end up cancelling the operation due to the horrible snotty cold and cough he’d had for weeks and we’d then have all the hassle of keeping him fasted a second time around.  Concerns about whether he was actually going to be killed or maimed by the experience somehow ended up fairly tertiary.

Anyway, I went through the proposed order of events with Jamie several times in the weeks beforehand while going through the ‘hospital’ story in our Usborne First Experiences book – "Jamie’s going to go to the hospital too!   You’re going to go and have your eye fixed.  When you get up in the morning you won’t be able to have any breakfast or any milk until after your operation.  Then we’ll get in Daddy’s big car and go to the hospital.  We’ll go to a ward like this one, and you’ll see a nurse like this lady here, and a doctor with a stethoscope like Mummy’s, and then you’ll go for a ride on a special trolley like this one, and this doctor will put a mask over your face like this one, and that will make you go to sleep, and when you wake up the operation will all be over and you’ll have lots to eat and get to play with all the toys."  It’s hard to know how much of this Jamie took in – he was much more interested in the little yellow duck pictures that Usborne sneak into the First Experiences book for children to spot.  He probably thought the hospital was a place where you can find ducks everywhere.  I hoped he wouldn’t be too disappointed.

I had a plan for the day of the operation which went like this: Wake up early, change Jamie’s nappy somewhere between 5.30 and 6.00, thereby waking him up just enough to give him a drink of water (the letter from the hospital said that we were allowed to give him water up to 6 a.m.), settle him back to sleep again, wake Barry, get everything else completely ready for departure with the engine running in the car, go get Jamie just before 7.00, slip his coat over his pyjamas, put him straight in the car, and hope he’s drowsy enough to fall straight back to sleep when we start driving and sleep his way to the hospital, where there will be so many strange and interesting things to look at that he will be distracted from thoughts of food for the next hour or so, at which time his operation should start.  (We’d been told that the hospital would try to arrange for Jamie to have the first slot, as he was so young – I phoned up the day before and confirmed that they had indeed managed to do this, which was quite a relief.)  Having made this plan, I waited with trepidation to see what would go wrong with it.

What happened was that Jamie, in a rare display of impeccable timing, woke up of his own accord at around a quarter past five.  This would have been a problem if it had been a normal Wednesday on which I was trying to get ready for work at this time, but, of course, on that particular day it was perfect – I went ahead with getting him changed and giving him his water, then snuggled up next to him in bed for the next half hour so that he could go back to sleep and I could enjoy a little while of lying down with him.  Unfortunately, he then woke up again shortly after six while I was trying to get ready, which was less perfectly timed.  I made him stay in his room while I rushed round getting my own breakfast and getting ready, as this often gets him back to sleep when he’s woken up too early, but on this occasion it didn’t work.  Meanwhile, my nerves were not helped by picking up the booking letter to put it in my bag to take with us and
noticing for the first time the line that had escaped both me and Barry
beforehand – "Should he develop a cold or any other illness between now
and his admission, please contact me as soon as possible."  Oh, great,
I thought – not only are they going to end up cancelling the operation,
but they’re also going to be cross with us for not having let them know
beforehand that he had a cold.  Which I probably should have done, but,
for goodness’ sake, he seemed absolutely fine and I know that ideally
you wouldn’t want to operate on someone with a cold but surely if you
cancelled a child’s operation every time he’d had a cold you’d just never get it done?

Fortunately, in spite of his early wake-up time, Jamie was quite uncomplaining for the entire car journey, which was a long one.  The journey between our house and the hospital offers a choice between ploughing through an area of infamously appalling traffic or going a very long way round the outskirts.  We opted for the latter; I’m still not convinced it actually took any less time overall, but at least we spent that time moving, which is an improvement on staying still when you’re in a car with a toddler, particularly a toddler who has just been upgraded to a new car seat with restraints that he can get out of whenever he decides that staying there has become too dull for his liking.

The route difficulties meant that getting to the hospital on time was practically a photo-finish.  On top of this, we then made it through the front gates to the realisation that we had possibly been a bit naive in assuming that we could simply find a sign saying "Eye Unit" and follow that.  (Oh, great – not only are we going to turn up and be in trouble for bringing along a child with a rotten cold and not letting them know beforehand, but we’re not even going to have the grace to do so on time.)  After some driving around, we found someone who could point us in the right direction and I hauled Jamie out of his car seat and headed straight up there while Barry parked.  We made it, only a couple of minutes after the 8.00 time that we’d been given.

The next hour was a blur of seeing the nurse, the anaesthetic SHO, the nurse again, the consultant ophthalmologist, and the consultant anaesthetist, and answering long lists of questions – was he allergic to anything?  Any history of liver problems?  Any previous anaesthetic?  Any loose teeth?  What time did he last have anything to eat?  (In the 91st minute of the Liverpool game just as Kuyt got carded, apparently.  I’m not totally sure the anaesthetist found this impressive precision entirely helpful in practice.)  Did I have any questions myself?  I asked how long it was likely to take, how soon I’d be able to see him afterwards, and whether I could be with him as he woke up.  About an hour altogether, I was told, counting the time for him to surface sufficiently from the anaesthetic for me to see him, and I could come round to recovery to see him as he started to wake up.  (I hoped he wouldn’t go through the last stage of waking up more quickly than predicted and wake up before I could get there, but there didn’t seem to be much I could do about it other than keep my fingers crossed.)  And would the cold be a problem?  Well, ideally you wouldn’t operate on someone with a cold, but if you cancelled a child’s operation every time they had a cold then you’d just never get it done.  Hooray!  My feelings exactly.  We were all set to go.

The ophthalmologist had told us when we saw him in clinic what the plan was for the surgery, but he went through it again.  Basically, squint surgery involves lengthening one of the muscles attached to the eyeball and shortening another, so that it comes more back into line.  (I have no idea how they actually do this without slicing the child’s face open – he gave no further details and I very carefully avoided finding any out.  Now that it’s all over and no longer a matter of oh-my-god-they’re-going-to-do-that-to-my-child’s-eye, I’ll probably look it up eventually.)  They might not correct it all the way because there would then be a risk of overcorrecting, and they’d rather err on the side of correcting too much than correcting too little.  (I didn’t ask why this was – I’m guessing it’s because a slight cross-eye looks better than a slight wall-eye.)  It was an extremely low-risk operation – apart from the possible risk of under- or over-correction, he couldn’t think of any risks to write down on the consent form (which did indeed have a specific section for listing risks.  By god, they’ve grown more detailed since I was a junior doctor.)  I asked him about the risk of infection, but he told me it was so rare he couldn’t actually remember ever having had a case.  I signed the consent form, reflecting that out of all the signatures I’d put on consent forms in the past, this was the first time I’d ever signed in the ‘patient or parent’ section rather than the section for the doctor.

Jamie was weighed (something he greatly enjoys, as he’s worked out that bouncing up and down on the scale makes the dial swing back and forth most interestingly – the anaesthetist managed to persuade him to stand still long enough for us to get a reading) and changed into a hospital gown, as I hadn’t bought his pyjamas (he was very pleased with this as well, as it had numbers on it), and given pre-emptive doses of paracetamol and ibuprofen, and had local anaesthetic cream applied to the backs of his hands ready for the needle (I’m getting events out of sequence here – this last was done much earlier in the proceedings, so that it would have time to work).  Then, when everything else had been done, he was allowed to go along to the playroom with us for the next few minutes until they called him for the operation, where he toddled around happily exploring the playhouse and the miniature table and chair with buttons that played music.  His gown was too big for him and trailed on the floor; he looked like the world’s smallest, most colourful acolyte. 

We were called just after nine. I’d been wrong about the Ride on the Special Trolley, as it happened – the day case surgery ward was sensibly situated right next to the theatres, and I simply carried him round with me when the nurse came to get us.  The ophthalmology theatre was separate from the rest, and as the nurse was new on the ward and didn’t know this we ended up in the wrong bit and had to go out and come in again.  When we found the right place, I was asked to sit on a stool, holding him firmly in a hug while the anaesthetists pulled off the sticky patches holding his topical anaesthetic cream in place and examined his hands for veins.  If you’re wondering, I felt a lot calmer than I’d have expected now that we were there – glad to be getting it done and over with.

"There are some bubbles up there, if you want them," the theatre nurse said to Becky, the nurse who’d come with us from the ward.  I wondered idly what on earth part of anaesthetic equipment or medication this was – surely bubbles were things you wanted to avoid getting in IV lines? – but then realised that what she’d actually meant was, well, bubbles.  Bubbles to blow as a distraction for children.  Jamie watched them intently – he was too overawed by this strange environment to be as delighted by them as he would have been in other circumstances, but he was coping well.  He jerked and cried out for a moment as he felt the needle go into his hand – the anaesthetic cream hadn’t been a hundred per cent effective – but, whether because the cream was having some effect or because he’s such a brave boy, he settled after that while they slid the IV all the way in and taped it in place, and I held him firmly.  He looked wide-eyed at the strange thing in his hand and at the syringes the anaesthetist had, wary but interested.

"A little aeroplane in your hand!" the anaesthetist told him.  "Now, some petrol to make the aeroplane go…" He started injecting the contents of the second, much larger, syringe.  "Hmmm, I think… could you just move him over to the trolley?  Just like that…"

I moved him carefully, not wanting to jerk his hand away from the syringe accidentally as I stepped backwards.  Concentrating on that, I didn’t even notice the moment when he went limp in my arms.  By the time I laid him on the trolley a second later, his eyelids were half-closed over my final sight of the squint.

"Now, then, Mum," the theatre nurse said to me "if you kiss him goodbye and go back to the ward, we’ll take good care of him."

"You do that," I said, as I straightened up from bending over him for that last kiss.  "He’s a special little boy."

I went back to the ward, and told Barry that Jamie had been sent off to sleep successfully, and we went down to the refreshment stall in the main foyer to get drinks.  Then we went back up to the ward for a long blank hour of paging through magazines and waiting, and, in Barry’s case, pacing back and forth as the time ticked past the hour we’d been estimated and Becky reassured us, when I asked her, that an hour was just an estimate and it could take longer for someone to come round.

When someone finally came to tell us that one of us could go round to recovery, I let Barry go – it seemed fair, since I’d been the one to go in with Jamie.  And after another long wait, Barry came back carrying a very sleepy blanket-wrapped bundle who slid gratefully onto my lap, locked his arms round my neck, and slumped against me in fiercely determined slumber.

I needn’t have worried that he’d wake up too quickly – he showed no inclination to wake up at all.  Barry said that in recovery he’d been trying to stand up, his innate urge to keep moving fighting against the fact that he was in no shape to do so, but he showed no signs of it now.  All he wanted to do was sleep.  The little boy across the ward from us, who’d had teeth extracted under a general anaesthetic, wasn’t so lucky – he screamed "I want to go ho-ome!" non-stop for at least twenty minutes solid.  It was an oddly soothing sound in my post-jangled state – I leaned my head back in my chair and let my own eyes close and my mind drift into a doze, letting the boy’s screams and the unsuccessful attempts of his mother and the nurse to comfort him wash over me in a distant rhythm, feeling the comfort of my son’s limp weight snuggled against me.

Eventually Barry asked to hold him for a bit and I relinquished him, and after a further while we decided that we really did need to get him to wake up if we were ever going to get out of here – by then, I felt his sleepiness had less to do with after-effects of the anaesthetic than with the fact that he’d been up far too early in the morning and was trying to catch up on sleep.  Barry walked around with him a bit and finally resorted to the secret weapon of taking him back to the playroom and putting a Teletubbies video on.  That did the trick – within minutes, he was wobbly but awake and following the tape with glee.

Then we had another very long wait for his medication – Paracetamol, Ibuprofen, and some antibiotic eye drops to apply twice daily for five days.  Finally, the medication was sent up from the hospital pharmacy and the nurse went through the doses with me and advised me to give him the wrong dose of Paracetamol.  I mean, obviously she didn’t say "Give him the wrong dose of Paracetamol", but the dose that was written on the bottle was incorrect.  I pointed this out and she assured me that it had been rounded up and I said that, yes, but a dose for a 15 kg child rounds up to 5 ml of the 6+ strength, not 6 ml, and she made some reassuring comment and I let it drop, since mental arithmetic has never been my strong point and I wanted to work it out properly on a calculator before blowing my mouth off about it, and, besides, what was she going to do about it?  She was the nurse, she couldn’t change it, and I was going to work out the right dose for him anyway when we got home, which we never would do at this rate.  But, yes, I ran the numbers through the calculator when we got home (or, to be more precise, got Barry to do so), and, yes, indeed, the proper dose would have been 4.5 ml and even rounding it up shouldn’t give a dose as high as 6 ml.  Which all presented something of a dilemma – should I write to the hospital about this?  After all, no harm done, and it’s one mistake, anyone can make a mistake, there but for the grace, etc.  Then again, I have no way of knowing whether it is just one mistake or whether the doctor responsible was making the same mistake regularly and whether I should, perhaps, have got someone to draw his attention to it before he made it with a child whose parents didn’t spot it.  So, yes, theoretically I should write to someone about it.  I’m still trying to figure out a way of doing so that doesn’t sound as though I’m whinging over a silly little quibble.

Jamie recovered from the operation without difficulty.  He had a patch of blood visible under the surface of his eye for about a week or so, and he developed a slight swelling around the eye a couple of days post-op which didn’t become hot or red and went down of its own accord as the day wore on.  (Excuse the detail.  I’m including this because this blog gets a lot of hits from people looking for information on toddler squints, so I figure some of those people might want information on what’s normal post-op.)  He hated his eye drops with the fire of a thousand suns – it turned out to be a good thing he had his operation just before the Easter weekend, as it meant I was around to hold him down while Barry put them in.  Which I did, following hospital instructions like a good little sheep, spellbound, I suppose, by the spectre of some shadowy and unspecified Divine Authority labelling me a Bad Parent if I didn’t do so and punishing me by smiting my son with eye disease.  The question of why, exactly, we were doing this if the risk of infection was as low as the ophthalmologist had told us did niggle at the back of my mind, but I never did research it to find out whether the eye drop use was actually evidence-based.

(His strawberry-flavoured Ibuprofen, on the other hand, was a resounding success.  When I introduced strawberry-flavoured toothpaste shortly after that, he rapidly dubbed it his ‘medicine toothpaste’.)

As for the final effect, it isn’t perfect – I ditched my original post title of "The Banishment Of The Squint", as I felt it was a mite optimistic – but it’s a noticeable improvement.  He’s also using that eye quite a lot more, switching between one and the other as he looks at things rather than relying primarily on his right as he was doing before.  I was hoping that this might mean we could finally ditch the eye patches (which he has started to rip off within minutes of having them put on each day), and, in fact, when he went back to see the orthoptist again she did teeter on the verge of so advising, but she caved at the last minute and decided that we ‘might as well’ go on with using them for now.  Might as well??  That’s not the phrase I’d use to describe the struggle to convince a toddler that he should keep his patch on even when he hates it.  Unfortunately, I was not at the consultation to point this out, so that was the advice we were left with and we’re still struggling with the patches.  He has another follow-up in a month, so we’ll see what happens then.  Meanwhile, at least his eye looks a lot better, and at least we have one of life’s stresses behind us rather than ahead of us, and Jamie dealt with the whole thing very well, so, despite the continued eye patches and the absence of any yellow ducks at the hospital, we’re really rather pleased with events.

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Filed under Adventures in Squint Correction, Here Be Offspring

Quick squint update

After a fair bit of further discussion and a consultation with some helpful anaesthetists over at Doctors.net.uk, I persuaded Barry that we ought to go ahead with the operation.  I’m glad now I did, because when I saw the orthoptist again (yes, she is an orthoptist!  I finally clarified that point!  I still have no idea what the difference is between this and an optometrist, but at least now I know whom I’ve been seeing), she told me that she recommended getting it done sooner rather than later.  Although, as the ophthalmologist said, the vision in that eye won’t be changed by the operation, it’s not quite correct to say that it’s purely a cosmetic thing – what the operation will give him is a chance of regaining binocular vision, if we do it soon enough.  So I’m glad we decided to proceed.  (Hell, if I’d known that I’d have put his name down even sooner.  Oh, well – hopefully he’ll never harbour any thwarted ambitions to be an RAF pilot or a professional tennis player, and it won’t matter.)

His eyesight in the squinting eye still appears to be doing fine.  Pat (I should just call her that – much easier) told me several months back that when he was around two we could test it more formally, by getting him to name a set of line drawings.  (Funny how far away that seemed then.)  Anyway, I knew his language wasn’t going to be good enough for him actually to name them by this stage, and she said that we couldn’t get him to point to them as we named them, because that would count as prompting.  Fortunately, there was another alternative – getting him to match identical drawings.  I knew he could learn to do this, so, at his last appointment, I got Pat to give me a copy of the sheet of pictures she used so that we could practice.  I copied it and then cut the copy into separate pictures so that I’d know he really was learning how to match the pictures themselves and not just their positions on the page, although this approach proved to have a drawback – he was so intrigued by what was effectively his first pack of cards that it was quite difficult to keep his mind on matching pictures.  Still, it didn’t take long for him to get the general idea. 

When Pat tested him she got me to hold him on my lap with the sheet of pictures while she stood at a distance holding up matching ones of different sizes, and Jamie took a careful look at each and then picked out the correct match for all except the smallest ones.  She pronounced herself happy with how his sight was going, but we still have to keep going with the patches, at least until he’s had the operation and maybe afterwards.  Which is a pain, because he’s much less willing to have them on than he used to be and it’s getting to be an increasing struggle.  (Oddly enough, he’s still quite happy with the idea of putting them on.  This morning, he managed to get hold of a box I’d left lying under the stairs, opened one of them up for himself, and toddled up to me with his glasses off and the patch in his hand all ready.  I put it on, and he ripped it off within a few minutes.)

Still, all in all, it seems things are going well.  So his name’s going to go down on the list now, and hopefully we can get the operation done in June or thereabouts (rules and regulations about waiting lists mean it shouldn’t take longer than that).  After that, we’ll have to wait & see how it goes.

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Filed under Adventures in Squint Correction, Here Be Offspring