What is’t you do?

So.

EEG result letter: ‘in view of your concerns about possible seizures…’ Ummm… wha? Seizures? I’ve never thought Harry suffered from seizures! He hasn’t had a seizure since he was 48 hours old! ‘…there was no evidence of interictal epileptiform activity or focal abnormality.’

So. Not epileptic, then. Erm… good?

He does still have the occasional peculiar eye movement and associated repetitive movement – my description of this to his Paed is evidently what actually scored him the EEG in the first place – but I’ve generally been of the opinion that he’s dealing with sensory overload, as opposed to a neurological flip-out. Because, you know, I see a dozen kids with these types of issues every day and know exactly what I’m on about. Cough.

Anyhoo. It’s nice to know that something we never thought was a problem… isn’t actually a problem.

We saw Harry’s new Paed yesterday, who is a neurology specialist. She’s rather quietly spoken, which was a bit of an arse, as Harry was tired, stroppy and sounding off at high volume. Consequently, even after we compared I-Missed-That-Bit notes afterwards, John and I are still a bit foggy about one or two things, but in essence it went well, I think. Hard to say, in truth, because I did 97% of the talking. Those of you who have had the distinctly equivocal luck to meet me will have observed that I am a compulsive chatterer when not perfectly relaxed, but given that she wanted to take a very comprehensive history indeed, there genuinely seemed to be an awful lot to tell. My not-so-inner Worrier was delighted to be quizzed so closely, but after reeling through fetal distress, IUGR, NICU, milestones, behaviour, muscle tone, digestion, gross motor, fine motor, eyesight, autism, hearing, hypermobility, sensory, vertebrae, physio, short stature, orthotics, School Fabulous, speech… I was parched. I lost count of how many pages of notes she took.

She tested Harry’s reflexes, which he’s not had done before; he seemed to find being tapped with a hammer both fascinating and delightful. I have a sinking apprehension that his versatile new knowledge will fully come home to roost tomorrow morning when I am dozing peacefully in bed and he pulls his usual trick of utilising my semi-conscious recumbent form as a racetrack / trampoline / ski jump / tyre wall / vaulting horse / crash test dummy.

She had a good listen to what used to be his VSD (Harry had a crashingly loud murmur; his old Paed joked on one occasion that he could hear it from the end of the bed, sans stethoscope. I immediately felt an urgent need to run away from The Joke in order to hide in a dark cupboard and headbang my mortified way to better acceptance and less fear of my 3lb 12oz-born son’s 1cm+ heart perforation. His Watch-Me-Turn-Blue! apnoeic episodes during every nappy change didn’t help). Harry, a stethoscope-owner himself, submitted to this with a frozen, delighted expression – before cheerfully piping up with a helpful ‘Dum dum dum dum dum’.

Eventually we ran out of time. I’ll have to see what the clinic letter says, but for now I think she’s testing his gut (troubled) and eyesight (probably perfect, but never been checked) asap; I should think the physio referral I asked for will happen now, and we’re going back to see her in a couple of months to discuss The Future.

I think… she Gets It. She told us at the end that it might be a while before Harry receives a diagnosis, as there was so much for her to sift through.

I then explained that I had started Googling ataxic cerebral palsy when Harry was 3 months old; that it had always been so abundantly, patently, and crystal clear to me that Harry was Not Quite As Other Children Are. The fact that 90% of my friends and family couldn’t see any issue whatsoever with Harry initially was a relatively minor pinprick, but when health professional after health professional was totally unable to see what I saw and wouldn’t take my concerns seriously, I became savagely frustrated. She listened, and she nodded. I couldn’t hear a word she said, mind you, because Harry was screeching like a black and midnight hag, and we departed.

Providing there is Progress, taking her time while picking out the clinical sheep from the transient-toddler-quirk goats is perfectly acceptable to me; the mere fact that she recognises that there is a diagnosis to give is… enough. It’s enough for now.

I spoke too soon, Mrs Hingle!

Our phone rang at lunchtime today; I picked it up in the kitchen which was, at that moment, thickly populated with chatting women, half-dressed toddlers (more on this in a moment) and tiny babies. After some urgent shushing, I was able to discern that the chap on the other end of the phone was from University Hospital in Coventry – our mammoth regional super-hospital: location of my infertility treatment and Harry’s NICU stay – and was ringing to tell me that they have received a referral from Warwick to give Harry an EEG – could he come to the Neurophysiology department first week in May?

I had a fleeting prescient flash of dread vis à vis attempting to glue electrodes to Harry’s unsedated head, but assured him we would be there. I was a trifle taken aback to be hearing about this course of action from another hospital department as opposed to Harry’s Paediatricians – but only a trifle. I have spoken to enough local parents in our boat lately to realise that the parent is generally not top of  not near the top of  bottom of just not on the information dissemination chart when tests are ordered, because that’s the way it works. A friend of mine actually discovered that a working diagnosis – a fairly serious one – had been reached about her child this way. In fact, if you wanted to picture NHS bureaucratic procedure as, say, some ridiculously overinflated Lovecraftian dribbling blob, with spiny limbs too feeble to shift its own shuddering bulk, then that’s absolutely fine by me. The core competency of the individuals involved in delivering our healthcare is high, and yet the delivery structure itself falls so aggravatingly short. Bah. Stop me before I get going, people!

Teh Positive: New Woman is obviously Briefed, Making Decisions and Doing Something about Harry. This is Good, and makes up for my disappointment on Tuesday when I learnt that New Woman never actually visits the nursery section at School Fabulous at all, and under 4s are all seen in clinic. I had immediately foreseen a months-long wait to see her, and was juuuussst puffing myself up to launch my usual NHS hurricane mixture of righteous indignation, charm, hectoring and pleading at the Paediatric department. I expect there’s a letter to me & the GP about all this lurking on a dictaphone, somewhere.

Anyhoo. Harry has spent the day at home with a hacking cough and a streaming nose – there are kids at nursery to whom a virus can mean Heap Big Serious Fucking Trouble – and minus a nappy. The young chap in question has begun potty training in earnest today; he has accordingly flashed both his new underwear and his tackle around our visitors very thoroughly indeed, and the sight of nomnomnomable Twinkling Buttock is becoming part of the scenery.

This is something that he has initiated himself (I would very happily have left it until warm weather and nakey-bottom-runny-round-outside time) and performed so well with (particularly in the turd department: we have a near-100% strike-rate at home now. Outside the home… ummm. Trickier.) over the last 2 or 3 weeks

that I thought it was worth getting tooled up with proper wobbly-weeble-proofed toilet equipment

http://www.keter.com/products/toilet-trainer/

and having a go at putting him into Big Boy Pants.

 The artwork – the captions of which made me snort a little – endeared them to the wearer immensely: Harry is a quintessentially chap-like young chap and can reliably tell a styracosaurus from a stegosaurus, although he has been awfully diva-like in his firm stipulation of a regular rotation of dinosaur throughout the day, quite aside from the ones that copped the odd leak. They went off and on like (insert your favourite un-PC joke here) all day, as he is bewitched by the novelty of it all. I also have a pack of Shaun the Sheep pants – somewhere – which would go down an absolute storm if only I could find the perishing articles, but he was optimistically given them for his 1st birthday, and… yeah. They’ll be layers deep by now.

We had about a 70% success rate today, which we’re delighted with. He had 3 accidents, 6 or 7 wees in the toilet with its new-fangled and fascinating step arrangement, and one in the potty. As with most things, I suspect his problems with attention may make this process more difficult for him: the accidents came when he was thinking of, or busy about, other things – and I had forgotten to remind him he was in pants. I am heartily, painfully sick of the sound of my own voice today. I have enquired about his toilet needs, on average, every ten minutes. Because Harry doesn’t necessarily tune in right away, I have to repeat the question, interspersed with ‘Listening, Please!’ Grenfell-like expostulations,

several times before he either shakes his head, briefly and impatiently (‘Nrr!’), or grabs, Eureka!-like, at his tiny todger before toddling off at top speed, bow-legged and tottery, to the toilet. 

At 32 months he is, in the scheme of things, not a particularly early entrant into toilet training, so I’m hoping he’ll have the wherewithal to build on today’s sterling performance. However, I have heard so very many woeful tales of both urinary and faecal backtracking and blips from friends near and far, that I’m not really expecting consistency. Hoping, yes (coz my laundry pile now hums a bit and I shall have to bestir myself about that shortly). Expecting, no.

********

On a last, different note, I have been trying to expand my library and track down some of the books I remember reading as a child. I was going to do lots of tricksy googling about this particular one which has been bugging me for years, but it’s occurred to me to try the power of the interwebs first, especially the US contingent. When I was a slip of a girl, I read a book (or a series?) from my junior school library that is awful foggy now, but a couple of little things still tug at me. I have the strong impression that it was American child’s fiction, set in a rural location, possibly a farm. At least one of the children – I think, a girl – used to leave her bedroom via the tree that grew just outside the window. In a memory that seems associative with the same character but could easily be borrowed from elsewhere: there was a sentence or two to about the fact that the child wanted to cry about being unable to peel an apple in one long strand the way her uncle could, before telling herself not to be so bloody daft. Or words to that effect. 

Ring any bells, people? I know it’s horribly vague, but you must remember that I was less than 10 when I last set eyes on this book, so that’s 25 years plus. God, I’m old.

Lots of Nutshells

Once I have fought my groggy way, clutching my coffee, past the agony that is Waking (a confused and prolonged event involving small Tiggers, CBeebies, and the lusty blast of a 99p descant recorder that some abject fucking fool keeps forgetting to hide from the said Tigger) I spend my mornings feeling chirpily wide-awake, inspired and bloggyfied-up. I could write reams in the morning. By 8pm, when I am free to type uninterrupted, my Get Up & Go has slunk, shame-faced, off to bed and is snoring GnARrkKily with its mouth wide open and its chins wobbling. Lookin’ good, Billy Ray!

You must also factor in the fact that Harry had an awful tummy bug this morning, and I am waiting apprehensively for the first sinister flip-flop of nausea.

 There. I have made my excuses in advance.

Thank you so kindly for your bountiful MADS nominations. I haven’t aspired to much beyond avoiding arrest (both literal and cardiac) lately, but I would be ever-so deliriously pleased were I to actually make it onto… (intake of breath)… a shortlist. I am seemingly the proud possessor of nominations for Blogger of the Year, Funniest Blog, Best Baby Blogger, Inspiring Blogger, and Best Blog Writer – the typing of all of which makes me blush rosily, because I naturally feel that I am none of those things.

This does not prevent me being repulsively greedily acquisitive over the prizes, though, and the shortlists will be a highest-number-of-nominations-type-thing, so if you feel like pasting https://hairyfarmerfamily.wordpress.com into any of the categories… then I shall only mutter ‘Oh, please don’t give yourself any trouble!’ once, (quietly) before politely holding open the bloggy door and beaming at you.

Given that the UK have just kicked off a general election campaign (US readers please note: our election is on the 6th of May; the campaign is a single month long. One. Month. It is quite a sufficient time to slog it out. And if your news programmes become clogged up with our political frivolities – which they won’t, because why should you care? – then be consoled by my jubilant approval, in the nicest possible way, of the poetic justice. Your election, despite being an interesting one, killed me.) I shall add a word on tactical voting: the long-suffering organiser of this whole shooting match non-competitive bit of lovely bloggy fun is naturally full of angst at the nominations for baby bloggers who no longer have a baby, precisely. I feel Harry is now a tad too old for me to have a proper chance at winning that one.

Which brings me neatly onto the small man himself. His Paed’s appointment went ok. Ish. Sort of a no-score draw.

I took some notes along so I didn’t forget anything; although esoterically abbreviated, they were broadly comprehensible to all. I mention this because at the end of the appointment, the Paed asked if he could have them to refer to when writing his clinic letters. If I get copies of referrals describing Harry’s behaviour as Bloody Fucking Awful, then I’ll know he’s cribbed it verbatim.

Anyhoo. He listened. He’s always been a damn good listener, even when he wasn’t concerned because he just couldn’t see in Harry what I saw. (Neither could many people, to begin with, so I don’t hold it against the chap.) In a nutshell, I told him that Harry still has no speech (he currently has no meaningful words at all, and only a small handful of stock articulations ‘dis’, ‘dere tis’), has great difficulty with his attention & listening, is a compulsive & high-energy fidget & climber, has behavioural meltdowns of epic & violent proportions, is continuing to mobilise unsteadily, and has senses that appear to be wired up curiously – and are becoming curiouser.

In an even smaller nutshell, he took me entirely seriously – no speech at 2¾ years old does tend to get people’s attention, I’m finally finding – and said that he was no longer the right chap to be looking after Harry – which I was expecting. His colleague (whom I am hoping I have never met, coz if she’s the random Consultant Paed I had a run-in with in SCBU when Harry was 11 days old then we are already Not Friends; I have now perfected the rant that I should have delivered then and didn’t.) is the School Fabulous Paediatrician, with a specialist interest in neurodevelopment. He said he would meet with her in the next couple of weeks and relay all the information I had given him: she will then see Harry herself, probably in a classroom setting.

He did a particularly good job of not actually criticising his previous locum colleague for referring us, last appointment, to a paediatric psychology service that does not accept pre-teens. He explained that upon being made aware (by me) of the error, he had referred Harry to the child development service instead, for the multi disciplinary assessment that we were keen to have last year. I had, in fact, already heard a rumour to this effect; someone had spoken to someone who knew someone who had seen Harry’s name on the latest waiting list. Harry’s ex-Portage worker had been musing on the wisdom of referring him herself, some months ago, but had decided that an early referral would not necessarily shorten the wait.

Because that, right there, is the issue. The inevitable wait. There are hordes of kids backlogged, awaiting assessment, consequently, until they’ve turned 3, they’ve nary a hope of being seen. The multi-disciplinary assessment is the Thing To Have, you see. The various agencies have all changed their names so dizzyingly often that even the Paed was using old terminology, but essentially, a MDA is an in-depth look at a child’s quirks and capabilities, involves every appropriate professional service, be it psychology or physiotherapy, and results in an Individual Education Plan. Which is all fine and dandy, but I want it now, not in 6-12 month’s time. I asked him if a private referral was possible, but I think the sheer volume of disciplines involved makes expediting it impossible. He is asking the question for me. 

All I can do in the interim is highlight the things that Harry is not currently receiving any input for to his new Paediatrician when we see her – which had better be soon, or I will kick off sharply. Things need to be put in place: pronto. Current chap agreed with me that a epilepsy-type protective helmet for Harry would be a very useful thing to have, but I think I’m supposed to take that up with New Woman. He was very interested to hear that School Fabulous’s physiotherapist had already taken an informal look at Harry and proclaimed him to be Officially Unsteady (ummm… hooray? At last?!) and definitely needing supportive boots and possibly also a lycra suit for stability – but again, I think New Woman is going to be in charge of getting physio started, as she is already working on a daily basis with the physiotherapist in question.

I talked about an MRI. I talked about dyspraxia. I talked about ataxic cerebral palsy. I talked about Sensory Integration Disorder. There was, significantly, absolutely no squeaking of horrified accelerating chair-wheels from him this time.

In a final nutshell, he told me straight – as my medical friends have told me before – that a formal diagnosis is something that they will give only if and when they are able to do so – it is not what they are necessarily working toward having. They want to treat his function first, and worry about what label they’ve printed out for him afterwards.

I do see their point. I hate it, and I want answers for his difficulties about as badly as I want to breathe, but I do see their point: struggling to figure out the Why makes zero difference to Harry’s professional input at this stage.

I know all this, yet I’m fighting to keep down panic. I am struggling with an immense, crushing sense of urgency because I feel that we are losing time. Harry’s brain will only soak up information like a sponge for so long – anything he should naturally assimilate now, and can’t, will be so very much harder to learn later on. Study after study after keeping-me-awake-at-night-googling study has strongly (like: worry-type ‘strongly’. Worry Lots. Worry NOW.) linked language disorders to stunted academic achievement and, more importantly, psycho-social issues. I’ve already had to let go of some of the expectations I came into pregnancy with (happily including death, obvs.); I’m not ready to give up all the vicarious aspirations I have for him yet. I have a visceral urge to fight. Fight hard. And… I can’t see the foe.

Harry is developing wonderfully in some respects – his makaton signing and eye-contact is improving by gazelle-like leaps and bounds, and his understanding is demonstrably light years ahead of where he was at Christmas. He keeps remonstrating with me for saying the incorrect thing, for heaven’s sake; he’s undoubtedly smack-bang on his right age for receptive language skills. But not a word can he say, not a bloody word, and his sensory quirks are seemingly gathering momentum. He has started to taste, lick, and press his open-mouthed face against everything from tables to books. He is increasingly demanding that we – or anyone – apply firm squeezing pressure to his trunk in the shape of continual, continual, continual hugs. He is revolted by every imaginable scent. He is increasingly touchy about removing his coat and shoes, and clutches them to him desperately. He constantly chews his fingers, and rubs his gums until they bleed. He is still pressing his head into the floor and holding it there, spinning around in circles, and ‘windscreen-wipering’ his eyes back and forth.

These things are frightening me. They are the sort of spectres that the combustible bundle of beautiful gelignite that is Harry, could become extinguished by. I want these to be meaningless toddler phases, not symptoms of a disorder that could swallow him. My gut (which has yet to suffer an ignominious failure of insight) tells me to worry like almighty Buggery Fuckington and Seek More Help; utterly alarmed out of all intestinal countenance, not by any single developmental difficulty or potentially ominous quirk, but by the sheer multiplicity of them.

And now, now, I’m stupidly agitated with pounding heart and rapid breath, and my brain looks like this
Wordle: Tonight's Thoughts

and I need to remind myself that there’s a nihility of action-options open to me at 9 at night during the school holidays. I tell myself: we have a new Paed who is supposedly rather good with heads. Let’s meet her. Soon. Tell her how I feel. Learn more. Explore all the options. Keep Calm. Then panic and freak out.

Anyway. I was describing our Paed’s appointment. He gave Harry a sticker. Harry likes stickers, and beamed winningly, before recommencing Operation: Frantic Departure and swinging off the Dr’s coat hanging on the door. 

This is likely the last time I will encounter the chap, so before I left I made a point of offering my hand and thanking him, again, for being there to save my son’s life in the very small hours of that memorable August night when Harry stopped breathing.

[There were three doctors present who struggled to stabilise Harry (a particularly difficult intubation, one of the Registrars later told me) when he turned very critical indeed. One was black as the beautiful African night, the other was – I believe – Pakistani, and the third was a Sikh. And that, among other equally heartfelt reasons, is why that fuckwit Griffin can bite me.]

On a slightly more up-beat note: whilst reading all the hoo-ha about the new iPad earlier this week, I suddenly had a primordial vision regarding the exciting potentiality of touchscreen interactive devices for people with special needs. I kid you not, I felt as if I’d just birthed a new theory of relativity that even explained gravitational motion in uniformed aunts. Really keen observers might have seen an cartoon light bulb flashing above my head.

When you’ve finished pissing yourselves laughing at me – I’m always late to parties, btw – tell me if you happen to know anything pertinent about pre-schoolers using an iTouch successfully? By successfully, I don’t necessarily mean figuring it out. I left the room for a pee earlier to find on my return that Harry had rummaged out an interactive kids’ disc, opened the tray on an external hard drive he has never seen used, inserted the disc, and clicked past the welcome page. In-between vomits, this was. He also turns the TV on, selects his own DVD if permitted, opens the tray, loads it, presses play… want your new hardware installing? Harry’s your lad. I suppose I mean: successfully showing an appreciation that it is not entirely a toy. And not killing it stone-cold pricey dead by dropping it. 

School Fabulous are keen to start Harry off on PECS and the thought of lugging the folder about had been depressing me hugely; although I know he’ll pick the system up beautifully, it’s not an attractive option in practice. I’ve seen the future and I want one.

Can we come and practice on yours?

Cracked Pot

This afternoon we all bumbled off to Hospital, with me silently dreading One Discharge: No Appeal. That… didn’t happen.

Totally didn’t happen.

Our consultant Paed was drowning in work and had subbed out half his clinic to a locum consultant: the delightfully named Dr Pal. And she was very, very nice. Harry was already in full melt-down by the time we got into the exam room, and had already thrown himself about the waiting room in a frenzy, putting two fresh lumps on the back of his head and another bruise DIRECTLY ON TOP OF his existing shiner.

Incidentally, is that purely a UK colloquialism? A black eye! Here, have another photo, with this morning’s bloody lip featured for good measure (fell off the padded piano stool straight onto the exceedingly UNpadded square wooden stool that he insisted go there, in defiance of safety. I moved it twice and he went bananas and hit me both times so eventually I just let him leave it where it was. Whereupon he promptly crash-landed on it the moment my back was turned.) along with the crusted snot, neither of which he would permit me to wipe.

Harry bruised

Where am I? Oh, yes. The toy box in the corner distracted Harry sufficiently (and he fell over on the way across the room! For no reason! She noticed! Hooray!) for me to give a very truncated precis, and I had just told her that Harry’s behaviour had me in tears most days, when the toys lost their appeal and his hysterical shrieks started up again. He threw a toy car across the room like a rocket, and I’m pretty sure the Dr shifted on her chair ready to take cover behind the desk at that point, because it was blatantly obvious that he was planning more missiles just as soon as he could grab something else. He calmed down briefly when shown some lego, but soon decided that it would look much better embedded in Daddy’s eyeball. John eventually just had to sit and hang on to him for grim life in a sterling effort to stop him dashing his own brains out, and the next 10 minutes of our conversation were surely audible along the corridor because we were HAVING TO SHOUT to be heard.

After this, John decided that enough was enough and carted Harry outside in search of somewhere softer; there was a wincingly near-miss with the doorframe when Harry violently threw his upper body backwards the instant John loosed one hand to turn the doorhandle (a scenario that has drawn blood from Harry on more than one previous occasion) followed by the sounds of hoarse screams fading slowly down the corridor.

Dr Pal said …well, a lot, really. I loved her from the moment she asked me – without a trace of irony – ‘If I had a medical background? No? You understand the clinical issues unusually well’. I glared at John like a Medusa, and I hope he knew that if he had even so much as shaped his lips into anything that looked like the first syllable of ‘Internet’ or ‘Google’ then he wouldn’t have lived to see tomorrow’s dawn. I fell in girly love with her a little more when she said ‘I can see you’re going through hell. This is certainly extremely challenging behaviour.’

My lip immediately started to quiver (as it naturally does when you’ve been feeling all along that you are a teeny bit entitled to feel sorry for yourself but no-one is actually Seriously Getting It apart from you and your innernet buddies, so you haven’t really felt fully justified in wallowing in a mudbath of Waaaah! and you’ve been quietly keeping a lid on things, rather) and my inner Stiff Upper British Lipness (whom I picture as a particularly well-moustachioed Sergeant Major) was obliged to roar at me imperiously; something along the lines of GET A FUCKING GRIP ALREADY! followed by DON’T YOU DARE WASTE TIME BLUBBING JUST BECAUSE YOU’VE HAD A SMIDGEON OF SYMPATHY! and JUST BECAUSE THERE’S A CHANCE THAT SOMEONE WHO CAN DO SOMETHING ACTUALLY AND FINALLY UNDERSTANDS! It was a toughie, but Sergeant Major won, and I retained the holey and cleanliness-compromised emotional cloak that I term my dignity.

She listened to the lot: trainwreck pregnancy, premature birth, neurological worries, mobility problems that no-one can see except the people that, like, actually know him, his near-complete absence of speech, his sensory quirks and oddities, and his dreadful, dreadful behaviour and how it does – and does not – manifest itself. She listened with amusement as I dryly described alarming our regular Paed with my proffered diagnosis of mild ataxic cerebral palsy.

And then she told me – and it’s still ringing round my head – ‘Your fears are valid.’  

She is taking this seriously. Someone is finally taking Harry seriously. This is the first time that I’ve genuinely known that someone isn’t blowing smoke up my arse.

The first thing she has done is fax an urgent referral to the community paediatric psychologists. She explained that there are painfully few – read, no – magic wands they can wave, but they can certainly help support and advise us in our management of Harry’s anger and frustration, whatever its cause. Which would be balm, because John and I are certainly not singing off the same Tantrum Management hymn sheet currently.

And then there’s finding out the cause. She courteously deferred to our regular Paed’s final say-so, but she has provisionally referred Harry for an EEG and an MRI scan.

That’s the whole nine yards.

General anaesthesia.

Brain scan.

Shit.

She explained that our regular chap may want Harry’s psychology results before he oks it, and suddenly I felt extremely grateful that Harry’s Paed is a very cautious chap who probably thinks there’s not much wrong with him. I hope he’s right.

Despite the fact that I’ve been jumping up and down and squeaking earnestly about brain damage (to any medical professional who’ll stand still long enough to listen) for the last couple of years, I’d kind of got used to being considered this paranoid and eccentric crackpot mother who has a bee in her bloody bonnet.

I’d scooched out a comfy little place to sit, and the view from here is… sort of alright, you know? Suspecting but not knowing.

The next step towards knowing actually involves shoving needles and drips in my struggling little boy, filling his veins with cold, potentially deadly drugs that course their way into his tiny, brave little heart (only a few months healed of its hole) and head, temporarily shutting down the vibrant, vigorous, energised, enquiring, affectionate, beauteous personality that is my son and rendering him limp, absent, forlorn. Unreachable in his darkness. Alone. Unmothered. 

All anaesthesia carries a risk, and Harry’s middle name has never been Lucky. If he didn’t wake up, I don’t think I would watch another sunrise, either.

John’s gone quiet; he’s not keen on the idea. We have to ask ourselves – and them, at length – what the possible benefits of having a clearer picture of Harry’s clinical diagnosis are. It’s not an absolute: people with very obvious neurological impairment can appear undamaged on MRI. The brain is an unimaginably complex piece of kit and, even if we establish that Harry does have damage, and the nature of it, I’m not too clear yet about how that understanding will help us improve his function. So many questions.

Tonight, I really miss being the crackpot mother. I think it rather suited me.

Some Perfectly Adequate Crying

One of the Piddle Mums is a proper sweetheart. Really and absolutely a sweetheart. Every time I’ve looked a little down, a little stressed, a little distraught at babygroup – she’s been on the phone or texted that night. She is absolutely the type of friend I would like to be to other people – and know I never could measure up. 

Late this afternoon she rang my doorbell, prompting John, who often divests himself of his diesel/chemical/shit covered trousers in the hall, to dive entertainingly for a pair of baggies. 

‘I can’t stop,’ she said (and the frantic sounds of trouser-fighting behind me subsided), ‘but I thought you deserved these.’ She held out Thornton’s chocolates. ‘I felt so sorry for you this afternoon. I followed you out into the street when you left, but Harry had gone a bit quieter and I didn’t want to set him off again.’ I choked back the fast-rising FLOOD OF SELF PITY and sadly told her he had merely been taking stock of the change of surroundings. It took me several minutes – and some reasonably forceful handling – to insert him into his car seat and get the straps done up safely. Longer than it should have done, because he’d ripped my specs off and thrown them in the road – whizzy with cars – behind me, and I couldn’t rescue them because that would have entailed actually losing my tenous grip on the spitting hellcat that was my child. She twisted her mouth in sympathy. ‘If you ever want to talk… I know it must be hard…’

Bless the woman. She’s right. It is hard. He has dozens of smaller meltdowns everyday, and it’s by no means the first time I’ve lately been obliged to bodily remove him during a Harry ‘Special’ for the safety of the children around him, not to mention his own. I tend to have to carry him out past a row of wide open eyes, all watching in silent amazement at the sight of a child who has absolutely and spectacularly lost it.

But… plenty have it much, much harder. He fills our lives. That’s my actual son headbutting the door over there, everyone! He’s fabulously lovely, really; a tiny knight continually charging off to do battle, or at least prod some serious buttock with his lance.

lance 1 

His Portage worker came today, and I took the time to explain to her how awful his behaviour is becoming. I empathised with his communication frustration and she pursed her lips. ‘Well… he does point… and tow you about… ask for things… signs a lot better now… I suppose it could still be frustration, but perhaps… I don’t know… he’s a bit young, still… don’t usually do anything before 3… it might be worth exploring… referral to a behavioural psychologist?’ 

So I’m now back with the worry that Harry’s communication delay is incidental to the rages and he is actually simply a particularly cross toddler, with an extra-concentrated dollop of our worst character attributes to boot. I can… ummm… see ourselves. In him. Clearly. I am generally at least as furious and indignant as Harry is when I don’t get my own way; I am also, under the fluffy babble, a high-handed and imperious bossy-boots. John… cannot count altruism among his good points.  He frequently has minimal regard for anything or anyone that does not directly benefit his own sweet self. Come to think of it, we sound just like a pair of classic toddlers ourselves.

John surprised me a little this evening by accepting the suggestion of a paediatric psychologist without demur – but on the other hand, he has been kicked an awful lot lately. Whether we manage an NHS referral is another thing altogether, as I rather expect Harry’s Paediatrician will be slaveringly keen to discharge us when we see him next. Physiotherapy, apparently, can Do Nothing For Us.

I walked out of his physio assessment last week completely bemused. I couldn’t shake the feeling, paranoid ol’ me, that I was being fobbed off. She let slip knowledge regarding Harry’s background that made me suspicious that she had spoken to Harry’s Paediatrician already, as by the physio department’s own admission, the referral he made to them had contained hardly any information.

He did fall during his assessment, often. Mainly, as the Physio correctly said, through not looking where he was going, or simply not taking any care not to fall. Such face-plants make up probably 60% of his total overall but were maddeningly predominant that day; his inexplicable collapses and sinuous wobbles he didn’t really exhibit properly. She put him on a ball and swayed him about to test his muscle tone, and he actually responded wonderfully well. I mused as I watched them: lately, he never knocks the back of his head coming down slides – he has greatly improved the muscle strength around his tummy and neck without me actually noticing it.

She conceded that he had hypermobility in his joints and ‘floppy’ muscle tone. She told me he had done well to hit his physical developmental milestones on time: she saw children with this degree of hypermobility and floppy tone not walk at all until they were 2. Generally she would prescribe exercises to increase muscle strength – but Harry is already unusually and ferociously strong. I may have rubbed my bruises reflectively as she said this. She commented that he was a quite exceptionally high-energy child, and consequently: his own best therapy. A less active, driven and determined toddler would have been significantly less mobile, which did make sense.

She told me she could see no evidence of any neurological complication – and could see nothing to support our impression of low trunk muscle tone. Which puzzled me no end, because floppy muscle tone IS low muscle tone; I understood them both to be terms for hypotonia. Her explanation of her explanation confused me still further – something about him being congenitally floppy in tone, but it not being anything to do with his brain. Ummm. Ok. She wasn’t clear, and neither was I: doubtless his Paediatrician will give us a precis when we see him.

A part of me thinks I should relax and play the watch&wait game. Irrespective of what’s causing Harry’s wobbles, a paediatric physiotherapist has told me there is nothing we can do to improve his walking. The other part is screaming in frustration and considering a private referral to Second Opinion Land. When Harry goes to nursery, he has to walk holding my hand along at least 200 ft of pavement. Harry doesn’t do straight lines or exciting outdoor situations very well, so he generally falls about 6 or 7 times during that walk. I notice people noticing. And then I think they must be noticing all his bruises, too. On Tuesday, he fell about every 10ft and a waiting Mum asked me if ‘he’d hurt his legs?’ 

I came home and sobbed, because I don’t want my son to be the one that everyone looks at because he can’t walk properly and can’t talk, or be the mother that people feel sorry for and give chocolates to. And then I decided I’d better snap out of it because A) all I wanted was a child to love and care for – I don’t remember making conditions about exactly what sort and B) John wasn’t taking a blind bit of notice, bar a quarter-turn away from his on-line bridge session* and a vague pat on the leg, so it seemed a waste of some perfectly adequate crying. We had a bit of a row about that. (And… umm… about Mandatory Forcible Toothbrushing Being A Bad Thing For Children, too… and about the fact that John thought we actually didn’t need a fireguard because, a-ha, get this… Harry (just two) COULD BE TRAINED not to go near or touch the incandescently hot woodburner. I usually reserve the exclusive right to criticise my spouse, but feel free to tell him what you think about that one, coz the daft old sod still thinks he’s in the right.)

*Incidentally, if you happen to frequent http://uk.pogo.com/games/bridge at all, and you encounter Big Hairy, DHairy, or The Hairy One, or some hirsute equivalent… yeah. It’s him. He’s quite good: even his genial soul of a father remarked dryly one day that ‘his beady eyes can see round corners, I reckon’. On our neighbour’s annual Whist Drive, watching John’s eager scramble to leave any table where he has been landed with me as a partner is… priceless.

Where was I? Oh, yes! Moaning! Which is a bit misleading really, because, bad afternoon today aside, things are Really Not Too Bad. I have cheerfully and shamelessly told a whopping great Untruth to the nice lady from Portage, telling her that I am reducing Harry’s daycare Tuesday and Friday sessions to just Fridays (I am… come next month. Or the month after. The new year, say. In the new year.  At some point.) and taking him to his special needs nursery on a Monday (which I totally, totally am, they having most obligingly agreed Not To Mention To Anyone about his cough Wednesday session). It might not work out, as, together with his visiting Speech Therapy and Portage, it’s a lot of input, and my calendar is a bit scribbled-on, but Harry does seem to thrive on excitement and activity. There’s none of it we can’t decide just not to do for a few days if it suits us to take a break.

I’m sat here munching the chocolates – having already lost Not One Jot of pre-laparoscopy weight – and occasionally coughing like a blocked machine gun, as I have a cold I can’t shift. I had planned to catch up with my commenting or sort my delivery out, but I’m actually going to go and watch Scrubs with John instead, and remember, today, to feel thankful for the fact that I am able to take photos like this

Whizzy car

and revel in the fact that I can take half an hour out to ignore the housework during the day while Harry naps and play with frivolities like this instead

wreath

while the tiny chap upstairs in bye-byes land gears up for another full-throttle day tomorrow.Shark!

Shark!

He Can’t Join The Army

Agriculture starts with an A: so let’s start there. The BIL/SIL farm didn’t quite make the reserve they had set. They were attempting to sell a farm which has suffered mortally from floods and bovine TB, complete with a cottage and huge moneypit 18thC manor house in a state of moderate disrepair, in order to hopefully buy something larger, better situated, with a modern farmhouse that doesn’t burn such swingeing holes in the balance sheet. John and I felt anti-climatic afterwards; we were vaguely hoping they might buy somewhere nice near the coast where we could leave our battered caravan, reducing the linear mileage of our Towing Shame.

B is for Bar – which is where we ended up after the sale. We had arranged parental babysitters (C is for Cloud, which is what appears to be sitting over everyone’s marriages currently) for the evening, but in retrospect we should have made an early escape from the auction room to the pub. D is for diarrhoea, which I what I was obliged to scurry away from the bar to attend to an attack of, my son having kindly passed on his affliction of unknown origin.

E is for total fucking Eejit, which is an undeservedly kind label for the man that designed Warwick Hospital carpark. F is for Fit, which is what Harry promptly threw when we infringed his civil liberties by attempting to measure his height – when we finally arrived, breathless and carpark-stressed, at his appointment. G is for little Git, which is what I hissed at him under my breath, before realising the children’s clinic nurse could totally hear me.

Which brings us to H, for Harry.

Harry’s Paed appointment was… hard work. He simply didn’t seem to fully comprehend the nature of what I was describing. He clearly doesn’t see what we see (Harry walked beautifully in the clumsiest sandals I could find to put on him, damn him!) and we could discern his politely concealed scepticism. He looked less than delighted when I produced my list, but he’s essentially a cheerful chap and dutifully noted everything down. It was quite apparent to him that we were not accepting a brush-off, and the fact that Harry’s SALT had already referred him elsewhere for mobility assessment helped give our standpoint a little more gravitas. He then gave the little lad a thorough going-over.

The upshot: Harry has some hypermobility in his joints, which would clearly account for some of his wobbles and clumsiness. I can feel Shannon wincing from here, but he is thankfully unlikely to be suffering a very acute form of this condition – the Paed gave Harry’s joints a pretty intensive mauling about, and any extreme double-jointedness would hopefully have been rather more apparent.

John and I realised afterwards that we often feel his wrists and ankles click when we are rough-and-tumbling. However, I have today discovered that I can easily bend my own thumb back far enough to touch my forearm – and remembered that my pregnancy physiotherapist (obtained when my pelvic ligaments went ffffflllhhhhueeeurrrrppp [yes, it sounded just like that] at 20 weeks) called me ‘ever so bendy‘ (‘for a knocked-up total fatty’, was the end of her sentence that I heard being left unspoken) but, flexi-mother (and John was sorely disappointed to have an Officially Bendy wife who was far too complicatedly pregnant to DO BENDY STUFF with) genetics notwithstanding, there’s something more than some wobbly joints amiss here.

The Paed ordered a hip x-ray which we attended straight away – with a now-tired and uber-screamy toddler who thought being held down under the Big Scary Device was Not Nice, and signally failed to share his Mother’s amusement at seeing Daddy wear a tabard – but there was no-one around to interpret the results on the spot (hhhrumph!) so we’ll have to wait and see. We’re not expecting dreadful news; I hope we’re right. He also referred Harry for physiotherapy in order to try and work on his balance, which is the outcome I am most pleased about.

He lay flat on the floor to have a close squint and declared Harry’s feet to be flat as pancakes – I assume he meant even by the toddler-species usual flatfoot standard – and he thought some arch supports may be useful in correcting his gait. Which was missing the whole unsteadiness point by about a million miles – but we’ll give them a trial anyway.

He briskly dismissed our concerns about Harry’s height – 78.5cm – out of hand, as he is following his percentile. The 0.4th percentile. He noted his complete lack of clear speech, but didn’t linger on the topic.

I told him straightforwardly that I was absolutely convinced Harry had taken a neurological knock during pregnancy. He told me that he could see no subtle markers to suggest such a thing, although he did ask me again about Harry’s assortment of strange tic-like repetitive movements I had earlier described to him.

I can’t agree with him. I just can’t. But neither am I particularly wound up about it, because I think the question is currently of academic – and parental – interest only. We got our x-ray. We’ve obtained some physio input, which will surely identify that Harry has Issues, and help to overcome them. We have a comprehensive home assessment due this month, which will presumably be done by people who can spot Wobbles when they see them (and have Clever Solutions up their sleeves, probably called More Physiotherapy). We’re not discharged. I’m happy with those results for the time being.

Our next-door neighbour, R, dropped by today to enquire how it had gone. She is a darling neighbour, a senior anaesthetist, and her daughter is Harry’s Godmother. Hubby is a GP, which is awfully reassuring when it’s a bank holiday weekend and you have a tiny, tiny, tiny baby who coughs, coughs, coughs. As we stood in the doorway and watched Harry slowly topple forwards into a plummeting nose-dive off the caravan step – a nose-dive which we agreed any normal toddler would at least have attempted to correct – she told me that she is convinced that low muscle tone is actually where Harry’s balance problems stem from, and, having read around the subject this evening, and given myself neck-ache from nodding furiously, I am certain that she is right. Mild trunk hypotonia with a judicious sprinkling of hypermobility and a soupcon of toddler-judgement FAIL would be a diagnosis I could totally get on board with. Perhaps a small prize would be appropriate for the first medical professional to formally give it?

Harry, of course, thinks his falls are absolutely all par for the course, and has IN NO WAY (and oh, dear God, how I wish that I had more emphasis available to me here than coloured bold capital italics) learnt to exercise more care, take things slower, look where he is going, or avoid blatantly unstable surfaces. He blunders straight into, over, under and through everything in his path with blinkered, Light Brigade determination. He is not one of those children who, injured, retire cautiously into immobility. He is, it seems, his own best physician as he ceaselessly patrols his little world, searching vigilantly for virgin ascent routes to the bookcase / worktop / fridge / dining table / woodburner / desk / windowsill summits. The only direction he wants to travel in is Up, and he lets nothing short of plummeting, blood-letting disaster hold him back.

And sometimes not even then.

Toddler bloody lip

However all these issues work out, he will plough on, utterly regardless, following an agenda that is entirely his own.

I like my son.

Itchy and Scratchy

*updated in 2014 (as I still get an email every few months to ask me about this) to add: the creases are gone. Grew out. Evidently just one of Those Things.

I have noticed a convention in the blogosphere whenever Bad and Shameful Parenting Mistakes are owned up to: the comments generally take the delightful form of bracing one-down-manship. There is always a baby who was dropped further – and bounced higher. The Bad Mother trophy is generally hotly contested by an assortment of piteously hair-shirted current care-givers who are flagellating themselves over recent feeble crimes of minor omission, or by wise and wise-cracking seniors who are gleefully recounting their youthful bouts of maternal butterfingers.

I love these posts. Everyone else’s failure to achieve parental omnipotence is wryly amusing and clearly, in terms of impinging on their child’s well-being, zero to low impact. Hard floors excepted.

But this is me we’re talking about now, so you can all get your damn dirty paws off that silverware. I win it for spectacular non-observance.

Harry’s health visitor (community paediatric nurse) noticed the first time she saw him that he had ‘uneven knee creases’. I mentioned it to his paediatrician – who uttered his standard pish! response – and then I obviously mentally filed the fact under ‘No Further Action’. And shut my eyes.

I, inexplicably (while continuously bleating about how my son cannot balance properly),  seemed to somehow stop noticing that Harry’s legs are completely different in shape.

Tuesday, he was stood in the window while I was snapping photos. I reviewed the photos. I saw this:

leg toddler

And blinked. And promptly rang the GP. John, when he got home, staunchly asserted that the dent was Harry’s extra knee crease growing up his leg and that it’d always been there, but I firmly pooh-poohed him and hauled Harry into the Dr’s office – the same Doctor, incidentally, that struggled to find cervix number 2, and eventually gave up in despair.

So. He never checked his hips – in fact, he never touched him at all – but pronounced his knee ‘puffy’. He then began to refer Harry to the hospital Paediatricians, until I told him we were due to see one in a month or so. He recommended I chase up the appointment quicker, and as we left the room I saw he was googling ‘hip dysplasia’.

No… umm… harm in that, precisely. It’s what I’d been googling before walking in there. I’m now thinking of the fun he must have had trying to google – and spell – uterus didelphys after my previous visit.

And I worry about my eyesight. I have just scrutinised nearly two years’ worth of photos, and John was absolutely right. Harry’s right leg has blatantly always had that crease, albeit it started lower down. How the buggery fuck have I not noticed it?

And that’s not all, folks! This evening, as I was trying to take a photo to better illustrate the crease, I also noticed that the creases on his left buttock are asymmetrical. I know perfectly well why I’ve not noticed his buttock creases before – they’re concealed by his nappy. Despite his new-found mania for divesting himself of the hated articles at every inconvenient social opportunity, he has very little planned nappy-free time for a reason

wee accident

and that stream of pale pixels is not a trick of the light. Our carpets are officially moribund, but they don’t need actually helping into their grave, thanks, son! What’s worse, whenever this happens I feel vaguely obliged to take the opportunity to have a stab at the beginnings of potty-awareness-with-a-view-to-training-one-day-when-he-can-actually-communicate – and happily chirp out that ‘HARRY going WEE-WEES! WEE-WEES from your WILLY, look Harry! Mummy and Daddy wee-wee in TOILET‘ and then I hear what I’m saying and nearly invert myself cringing.

Apart from being extremely cross with myself for not spotting his odd folds and creases earlier and highlighting them, I really haven’t got a clue what to think about any of this. I don’t actually think his balance problems stem from dodgy hips, as his Paediatrician does check his hips every time we see him. But those are some funny looking asymmetries, and he is constantly falling on his ass. And why, HELLO there, Dr Google! (As in: the Dr we all consult, as opposed to the Dr I have, who consults him too!)

We see his Paed on Wednesday. Bring it on.

Incidentally, whilst looking through early photos I spotted some humdingers. I would, at the time, have hurled myself unhesitatingly at the throat of anyone who so much as murmured a suggestion that my child’s expressions were not the absolute epitome of beatific and sunny baby beauty – but looking back, I see that perhaps the maternal eye was a little… fogged.

The look

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