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On the head holding

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I’m about to share a thing.  Before I do, before I share – I want you to understand that these two photos were taken in The Moment. You know what I’m talking about, right? How in The Moment everything is good and perfect and everything looks positive and rosy. I want to share with you all the positive and rosy things, because I always want to delight in these beautiful milestones.  But I want you to understand that either side of The Moment did not look like this, and that The Moment? The Moment was fleeting.

So, for a few seconds, during physio, Mikaere held his head up.

For a few seconds, he held his head up all by himself. He was able to keep his head in midline AND look to one side.

There was a moment, a beautiful beautiful moment where Mikaere smashed out another milestone, because for those few seconds, my son could hold up his own head.

This one is bittersweet, because a neuro-typical baby learns to hold their head at around the 2-3 month mark… Kai has a full year plus some on that. But you know what? Dr Doom and Gloom told us we’d never get here. That we’d never see this – my sweet boy holding up his own head.

I live for these days, the ones that contain The Moment. Today was a good day.

Side note: Not shown: the moment Kai pulled out his ng tube just before physio started. Also not shown: the screaming fit that happened at the end of physio that caused a giant vomit. Our days are always up and down.

On not having a paediatrician because the NHS is underfunded

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Everyone knows Mikaere is medically fragile. I’ve talked before about how large our medical team is and how we have an appointment of some kind every day of the week. Our life is a series of appointments and therapy and special needs groups. We go to all these things because it helps Mikaere, it keeps him safe, minimises risks, teaches him skills and relaxes him and puts all sorts of services in place for when things go belly up and he needs them. It’s a full time job, organising and ferrying him about, being present, understanding the goals and raising concerns and following up.

Of all these services, our paediatrician is the most utalised. He’s the person who knows Kai the best, who is our first port of call. He orders our meds and the bloods and all the checks. He’s our go-to person when anything is wrong, if the meds are out or there are more seizures or we need something. He orders all the referrals, the X-rays to check for hip formation and scoliosis. The orthotic referral for the suit, the physio referrals, the gastro surgery referrals. He pulls checks on all the difference services, speech and language, physio, OT, nutrition. He’s the person we work with, the person we make a plan with and who helps us works the system to make it happen.

We’re lucky that our paediatrician is covered on the NHS, as are most of the services Mikaere uses. For those not in the UK, the NHS stands for the National Health Service. It means that the basics of our healthcare system are free at the point of care. Meaning, we’re lucky that for the bulk of Mikaere’s care, it’s covered by the tax we pay.

Here’s the thing though. The NHS is chronically underfunded. It may not look like it from the outside, but it is.

Mikaere’s paediatrician was a locum, which means he was temporary while they found a permanent person to take that role. Which is fine, we knew this and accepted it. However, a month or two before end of the financial year the paediatric locums were let go as a cost saving measure. And – get this – there was a gap in care. There was a gap where there was NO ONE to pick up the case load, where Mikaere DID NOT have a paediatrician – our first port of call, someone to prescribe his many meds or chase anything (like that gastro we’re waiting for). We didn’t know where to go for all the things Mikaere needed.

My small, medically fragile and vulnerable son did not have a paediatrician because the hospital trust was told it needed to save some money.

As you can imagine, I raised an absolute stink about it. I emailed the Medical Director, Andrew Rhodes. I also emailed the Head of Child Services, James Gavin. I made an official complaint to the hospital, wherein they couldn’t tell me why officially why there was a gap in care. I emailed my MP, Justine Greening. I also emailed Jeremy Hunt (https://www.jeremyhunt.org/contactand if you can, I’d ask that you email him too, and tell him chronically underfunding the NHS is having a crippling affect on the most vulnerable of our population). I’ve complained to CQC and I’m in the process of a complaint with our local ombudsman.

And nothing happened, nothing changed. I got a few platitudes and apologies but not much more. And that’s because the problem is bigger than the trust that runs our local hospital and provides basic care for Kai.

Underfunding at the NHS is happening and it’s affecting my family in real and tangible ways – for the worst.

And I know. I know we’re lucky to live in a country that covers care for us, and we’re grateful for that. Except that we also live in a system where we couldn’t afford care otherwise. We couldn’t afford to pay for private care. I had to give up my (wonderfully well paid) job to care for Mikaere, and point blank, if it came to it, we couldn’t afford care for Mikaere outside the NHS.  Just to be really clear, we are not talking about luxury care for Mikaere. We’re talking the basics of what he needs to be safe and to live.

We rely on the NHS for Kai’s care, and it has a direct affect on his quality of life.

NHS underfunding is happening and it terrifies me.

On the superstitious good things

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There’s this thing about good times. When things are good, I feel like I’m holding my breath waiting for them to be not good. Like I’m waiting for the other shoe to drop. I’m told this not uncommon when parenting a child with a progressive disorder. When you’ve been on end of life and expect to be again, any good time is by nature of NKH, temporary. A nice, tiny haven where you ache to be with every fibre of your being, knowing full well you can’t live in the realm of ‘everything will be okay forever’.

So Mikaere recently enjoyed a good period. I got a bit superstitious about it and didn’t want to say anything in case it jinxed it. This makes zero logical sense and I know that Kai’s wellbeing does not hinge on whether I say he’s doing well or not. Nonetheless, there a words we don’t say unless we have to, and when we do we touch wood. (I’ve never been more superstitious in my life – when there are big, important things you can’t control you find ways to make yourself feel better about them).

So. Let me tell you a big thing. Mikaere hadn’t had a seizure since before Christmas.

Until last week.

I can’t begin to tell you how we watched him progress with no seizures. How his eyesight got better, how he started sleeping through the night, how his tone improved, how we saw more smiles and how he started vocalising more and eating better. Doing everything more and better. When his brain wasn’t fighting seizures it was developing. With new skills and new all sorts.

We don’t know why the seizures stopped. It could be he was well. It could be the medications were bang on. It could be the neuroprotectant meds we started. It could be that the planets were aligned or the sands were blowing east in Africa.

We don’t know and that bothers me. If I don’t know then I cant replicate it. This giant balancing act we’re constantly managing, we’ve hit on a magic time and I don’t know what we’ve done. Maybe we didn’t do anything. Maybe this is something we can’t control.

I hate that idea, because now the seizures are back and I don’t know why or how to stop them.

The first one I just caught out of the edge of my eye and I wasn’t convinced it was a seizure. It could have been a stretch, or a twitch. The second one was unmistakably a seizure. Fuck. Fuck fuck fuck fuck fuck. I don’t even know how to explain the despair. That terrible sinking feeling, the ‘here we go, battlestations’ type familiar mentality you have when your baby has frequent fits.

I’ve spent hours pouring over my notes of his meds, all the activities we’ve done in the last few weeks to figure it what was going on. Was his meds off? Had he outgrown his meds, has he put on weight or lost weight? Was he in pain? Was it something he ate? Did I feed him something with unlisted ingredients that he’s reacting to? Was it something I stored his food in, did something leach? Did he have a temp, was he ill? Was he teething? Is this NKH progression? The constant back and forth and second guessing.

And then the constantly whirling questions about the affects of the seizures. Was Mikaere going to lose all the skills we’d been working on? Was he going to lose his developmental momentum? Were we going to back to sleeping in shifts and constantly on guard? Was this going to slip down into something more sinister?

I don’t know. It’s tough not knowing. I did what I could, which was check and recheck his emergency meds, the rescue medication. I settled in the counting and timing and comforting after each one. I became paranoid about leaving the room, and would even move him into the bathroom with me if I had to use the facilities.

I just, I hate this. I hate that my baby is suffering seizures again. They’re so disorienting and horrible for Mikaere. They mess up our days and we’re all out of routine.

And then it got worse. The seizures started clustering, and we started having to give emergency rescue medication. I cried the first time, as a gently administered a round of midazolam. Kai’s grandad once told us that it’s midazolam they use the euthanise whales that have stranded themselves. I hate sedating Mikaere. I hate watching him slip into that groggy fog, I hate watching him fight to stay conscious. I hate watching him seize more though, so I do it.

But then he seized again, multiple times. And throughout the day I was using more and more rescue meds.

And I realise that this is exactly what I worried about in the good times. That we’d end up here, multiple clusters of seizures, having to use emergency rescue meds, watching my baby suffer continuously and not knowing what damage is happening to his little brain.

Seizures are horrific. NKH is such a bitch


I know I’m always asking. Help us find a cure. Donate, or buy an Eva book if you’re able. Every bit helps.

On The Charity Quiz

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I feel like we’ve got a few charity fundraisers under our belts now, but the quiz was one of my favourites – a proper good fundraising event. People came, we had a great time, we made lots of money for NKH Research.

It was a fantastic afternoon. We had two fab quiz masters (thanks Tony and Tess!) – who provided several rounds of hilarity. Some questions required some thinking but there was enough knowledge in the room that the questions could be answered (because there’s nothing worst than a quiz where you can’t answer any questions). There was a round about music, and pictures with landmarks and general knowledge. Lots of delicious pop culture questions (I’m no good at knowing the answers but I still enjoyed those rounds the best).

We even had a round about Mikaere and NKH – because how better to raising awareness about a rare disorder than making people answer questions about it? I did a bit of a spiel at the beginning of the quiz and later pulled all my questions from that content. However, there was a slight blunder when I gave an answer in a question. Faaaaail. Quiz master I’m not. It was great though, people were kind when I messed up. They also must have been paying attention, because most teams got all the questions right! High five for awareness, hey?

We had a great turn out, maybe 40-50 people? I love fundraisers, if only because our nearest and dearest make the effort to come and support all the things. It also meant that since the Quiz Mastering was taken care of by Tony + Tess, the bar by Sam + our friend Gareth managed the bar, once I’d got the food sorted (which was nothing fancy – mini cheese boards and pizza pinwheels, one for each table, assembled not even by me but by helpers (thanks Hari and Becky!!) I got to sit with Mikaere and chat. Full, proper conversations, with adults, actual friends, with nowhere else to be. (Isolation: it’s a thing). I drank my full of social goodness, it was amazing. So many wonderful people came – we’re blessed. Seriously.

Thank you to everyone who came. You guys are the best. We’re also thankful to Chris and Majestic Wines in Putney for helping with the wine/beer. We’re grateful and even more grateful to the people who bought it (it made for a very cherry winter afternoon).

Thanks to everyone who donated the prizes and the items for the raffles. Thank you to Tony and Tess for organising and for the generosity of everyone on the day. We managed to raise £1450 on the night, which will be matched (!!!) to a total of £2900. Not bad for an afternoon, hey?

These funds are all going to Joseph’s Goal to help towards NKH Research, and the gene therapy work done by Prof. Nick Greene in progress at UCL.

We’re so hopeful for a gene therapy cure. Thanks everyone who came for helping with that hope – we love you guys. What an amazing afternoon. Stay tuned for more fundraisers throughout the year. We’re thinking the next one should be a wine tasting – who’s in?

On NKH Severities

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There was a giant kerfulfle in our NKH facebook group the other day. Feelings were hurt, dramatic proclamations were made, some people left the group. I didn’t dive in, knowing full well that there was nothing I could say that would ease all the grief or anger. We’re too remote, separated by a keyboard and screen and our feelings about NKH are big, and personal.

At the heart of it, it was about grace with the different severities. See, NKH has a sliding scale of severity which is loosely split into groups with the unfortunate names ‘mild’ and ‘severe’.

The “mild” kids, they walk and eat and can communicate. The severe kids, they don’t. That’s what the grouping, from the outside, looks like. The different kinds of lives they lead. Both sides are still worlds away from a nuero-typical child, and we still are bound by the complexities that every NKH child shares, but there you have it.

Mild. Severe.

But what you can’t know is that while the severe kids clearly have a tough time of it, the mild kids are having a different, but equally tough time of it. Of behavioural problems and rage and self harming and aggression. “Mild” is not really mild. It’s horrific.

And I know this because in our group some people are okay with sharing openly (sharing is such a personal thing, so I’m grateful some people want to share, but I don’t feel like everyone needs to). So I know there is pain and fear and grief for the mild families because there are 2-3 families that share and tell the rest of us their stories.

That was a tough thing for me to learn – because when Mikaere was born I heard the severe diagnosis, and I saw photos of the mild NKH kids and I had a surge of hope. That Mikaere might be able to live, really live, and enjoy life. To be able to eat ice cream and run through grass and swim in the summer and sing along to bad pop songs. To have choice and communicate.

I also saw that it was unlikely for Mikaere. Because he was in a seizure coma, and we were being told he wouldn’t live, and if he did, his brain was likely to have so much damage he’d have severe severe disabilities.

Here’s the thing though. They were wrong, and Mikaere lived. As it stands right now Mikaere does more than some severe kids. And way way way less than some of the mild kids. Where does he sit on the spectrum? What kind of expectations should we be expecting for him? What kind life? Is the kind of with biting and aggression and rage? Is the kind where he’ll never be able to hold his head up, forever stationary?

It’s tough. NKH is tough regardless of severity. In terms of Mikaere… we actually don’t know where he’ll end up. We know that NKH is a progressive disorder – so it might mean he does really well, learns to hold his head up, sit by himself. hold his toys and eat all the things (Mikaere’s current goals we’re working towards) only to fall apart as the NKH progresses.

Or. Or we might get loads of funding and Prof. Nick Greene and his team might be able to push through with all the checks and requirements and there will be a clinical trial. Which Mikaere might be eligible for. Which might mean the NKH is cured. We might spend years and years years working on skills despite the damage it’s caused, but it wouldn’t be progressive anymore. Mikaere might live.

Maybe. I have hope still.

PS – If you’re looking for a way to help support the research, you can donate here or purchase an Eva book here. Every little bit helps.

On the helmet

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Last year, when Mikaere was in his end-of-life seizure coma and it was all doom and gloom, he spent a lot of time on his back. As in, 24/7 on his back.

Because he was terminal, no one saw the need to reposition his head. This meant Mikaere developed an epic flat spot. Like the flat spots of all flat spots.

The NHS told us it was cosmetic, nothing to worry about it. Except that because his flat spot was so epic there was a RIDGE. And Mikaere didn’t have the tone to push his head over that ridge, so he never looked left. Ever. Which meant all his muscles on one side developed, but not the other.

Cosmetic my behind. This is one of those lessons that hit me in the face: as much as you want to trust your doctors and therapists, always make the point to ask if an answer is NHS policy or evidence based. Because there is PLENTY of evidence that an epic flat spot like this is not just cosmetic (I’m fuming, can you tell?)

Here’s the thing, I asked initially when Mikaere was six months about the epic flat spot. I didn’t think to question it until Mikaere was a year. Fail. This is a fail because treatment is only applicable while Mikaere’s skull is still soft enough to mould, meaning only until his fontanelle closes, which typically happens around 18 months.

That extra six months could have been everything (which is why I’m so annoyed with myself).

But hey ho. Breeeeeeath out. Be calm. Wooosaaaaaaaa.

We went and saw a private craniologist who scanned Mikaere’s head and confirmed the presence a flat spot. A severe severe flat spot. You can tell just by looking, so this was no surprise.

So we got Mikaere measured up and now he has a fancy helmet. We were very very lucky to get it funded by The Boparan Charity (so very generous!!!) which we’re grateful for, because the cost of a helmet is almost two months rent.

He tolerates it quite well, which is handy because he wears it for approximately 23 hours a day.

We take it off for physio, swimming and bath time. That’s it. Mikaere even sleeps in it.

It’s not so bad, it’s slotted into the routine no problem. It’s been a wee while now and we’re already seeing gains.

Well, not ‘seeing’ because he’s got a full head of hair, but we go back every two weeks and the measurements are going in the right direction. It’s a millimetre by millimetre change, so we’re patient, but forever optimistic. As long as his fontanelle is open and the measurements are going the right way I’m happy.

Even better is that since we’ve started the helmet treatment Mikaere has started looking left as his ridge gets less severe. How good is that?!

So yes. I know so many people are on the fence with plagiocephaly helmets, but it’s been good for us. Stay tuned for a million more helmet selfies!

On the standing frame

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It turns out your hip sockets aren’t fully formed at birth. They’re flat and somewhere between 8 and 10 months, when babies first start standing, they start weight bearing on their beautifully chubby little legs. The more weight they bear through their legs, slowly but surely their hips begin to form sockets.

That’s all well and good, except that Mikaere can’t hold up his own head, let alone stand and bear weight.

So finally, after months of waiting, we got a stander. A beautifully green, giant piece of plastic special needs equipment (if I was upset about the chair, it’s got nothing on the stander. At least the chair is recognisable as a chair. The stander is more like a kid friendly Hannibal Lecter restraint. But without the straight jacket. My lounge is being overtaken with equipment with neon ‘special needs household’ signs all over it. This is our life now, my emotions and grief are scrambling to get on board, but hey ho. Moving on).

So the stander was fitted and now, for a minutes a day – Mikaere stands.

My kid? He’s tall. Super super TALL. I didn’t know that. I knew he was long, but I’ve never seen him upright. And while he’s lying down, sure, long. But he’s standing now. And he stands TALL. It’s an absolute delight to see him upright, he looks older somehow.

It’s early days yet, but we’re trying. If he’s in the mood he’ll tolerate it well. If he’s not in the mood he really really won’t (I don’t blame him, being strapped into a thing and not being able to move anything but your arms must be tough).

Here’s the thing though, if Mikaere doesn’t spend time in the stander, he’ll never form hip sockets. If he doesn’t form hip sockets he’ll be at risk of hip dysplasia (read: frequent dislocation) and osteoarthritis (read: pain and stiffness).

So, standing. It’s a preventative thing we’re doing.

At this point it’s only minutes a day, but eventually it’ll grow up to an hour or so, we’ll make it happen.

The things we do, hey?

On eating and diets and feeding tube awareness week

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It’s Feeding Tube Awareness Week this week – it’s where I’m allowed to shake my fist at strangers for looking so horrified when they realise Mikaere has a tube in his face. They go from smiling in anticipation as they peer into the depths of the buggy to pulling a face and looking away, not making eye contact. Or there will be the weird whispers (I can HEAR YOU) about how ‘that baby has a tube in his face’.

Kidding. I won’t shake my fist but I will give an epic death stare.

My kid has a feeding tube, yes. Bar three glorious/terrifyingly difficult weeks before he went into his seizure coma, he’s had one his entire 15 months. Without his tube there would be no eating, no meds and no thriving. That’s what the tube is there for.

I’ve talked about Mikaere’s NG tube before. How it works, what it does (delivers medication and food into his belly, by passing his mouth/throat. Which means it’s got nothing to do with breathing – probably the second common comment after the obvious ‘theres a tube in his face’). I’ve also talked about how we’re still waiting for the next step – a gastrostomy (where of instead of down his throat a tube will go through his abdomen straight into his belly).

I’ve even talked about safe feeding, and how a few months back Mikaere was so ill, it wasn’t safe to eat and he was declared nil by mouth. I’ve never been more grateful that Mikaere had a tube where we could still feed him.

As it stands, Mikaere is a different kid today. SO different from that sick little baby. His swallow is awesome and safe he’s protecting his airway like a CHAMP. He’s eating maybe half his feeds orally.

However, the things Mikaere is eating isn’t like a neuro-typical kid. No finger foods. Nothing solid. It’s all pureéd goodness and formula. Also… as a side effect of him being super ill beginning of December, Mikaere lost a lot of weight.

He’s been gaining, but he’s not anywhere near where he should be. As an example: Mikaere is height wise in the 98 percentile range. He’s LONG. Super long. Or tall, I guess is what you’d say if he was standing upright. But weight wise, Mikaere is below the 25 percentile. He’s skinny. He’s lost all his baby weight.

So we saw our nutritionist and looked over his diet, and while we’ve introduced purées it’s not been quite enough.
Our dietician has suggested an older kid formula equivalent with more calories… but it feels less like a formula and more like a “nutritionally complete” chemical liquid stored in tiny plastic bottles.

Other neurotypical kids aren’t on it, why does Mikaere need to be? So instead of chemically made up formula, we’ve been stepping it up. I’ve started introducing other things. Calorie dense foods. Avocado. Cream. Cheese. Honey. Chocolate mousse (that one goes down a treat). He often gets a pudding after meals. The calories, they are going in. Take that, nutritionally complete chemical formula.

Having that conversation with our dietician wasn’t particularly easy. When I talked about a blended diet she practically panicked and said ‘let’s not be too hasty’. But here’s the thing – when I start weaning Mikaere off formula, I’m not going to replace it with chemical milk. I’m just not going to. I hate the idea of feeding it to him.

I know that the blended diet is controversial (apparently the tubes aren’t made for blended food… only formula. Does that not sound like the biggest line of bs ever? If it is blended correctly it’ll be fine and unlikely to block the tube). But as far as I can tell, considering that Mikaere is eating part of his meals orally, we’re headed for a blended diet.

Which is to say, a blended diet through a tube. No formula. No weird replacement chemical milk.

And I know. I know this isn’t a thing you usually have to think about it – unless you’re knee deep two feet all in the world of special needs, tubes and feeding and weird chemical older kid meal replacement formula are not things you need to think about.

So, in the interest of Feeding Tube Awareness Week – next time you see a kid with tube, please smile and say how cute they are. When you see a parent feeding a child with a syringe through a tube that goes into their belly – don’t look away. Smile at them. Go say hi, say that the green goop looks delicious and their kid is the most adorable you’ve seen. If going up to talk is too much, just meet their eyes and smile.

I promise it’ll make their day.


On Mikaere’s path at Mikaere’s pace

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It’s been a while since I’ve seen our friends with babies. My NCT friends have all gone back to work and their babies are all in nursery or with nannies. Our other friends with babies – they’re in the process of going back to work too. Which means that weeknight visits are tricky, because they eat into family time. As do weekends. Our catch ups are now scheduled weeks, months in advance. Gone are the casual, spontaneous semi-regular catch ups.

That’s tough. I miss them.  Partly because they’re wonderful people, but partly because without them and their beautiful babies I forget.

When it’s just us, we’re in the Mikaere bubble. We can only see his path that he’s wandering down at his own pace. Smiles are frequent and his vision is getting better and his tone is improving. All positive positive things. At Mikaere pace this is all positively break-neck full speed ahead.

But then I see a child Mikaere’s age and their developmental milestones and I’m heartbroken. It’s hard not to compare, despite my attempts not to. But it’s hard not to grieve those what-could-have-beens with Mikaere. He’s not doing any of the things they are. He’s worlds away.

There was this little child the other day – in a café. Younger than Mikaere. And this child was so different – handing things back to her parents, shaking her head, pushing things away for no, smiles for yes. Standing on tip toes to peer over the back of a couch. Curious, and alert and aware. It was like Mikaere’s peers took several giant leaps forward while I wasn’t watching and I was blindsided.  The grief is overwhelming.

The other thing is that with Mikaere’s current developmental level – it’s easier to manage emotionally when he was little and tiny. Babies don’t typically move about anyway.  But as a long legged, skinny boy, I can see his body is made for running and moving and going. And Mikaere wants to wriggle and move. But he physically can’t do that. Not yet. Possibly not ever. And the bigger he gets the more difficult it is.

This grief, I’m beginning to see it’s never going to go away. It’s cyclic, ever present.

And it sounds selfish, but with seeing our NCT and baby friends regularly – I couldn’t be blindsided. We were constantly catching up, so small developmental leaps were easier to manage. It’s just how it was. It’s the space and the distance that make it difficult. The surprise.

I shake it off and love on my kid, knowing his path is his own and willing my mushy insides to get on board with the unconventional path we’re walking down.

Hey ho. As I cheer Mikaere on, I’m pretty sure I’ll always be feeling this grief for him.

On the gastro!

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The day after I posted about the previous gastro attempt we got a letter in the mail asking us to be admitted the following week – we were going to take a second shot!!

The paediatric surgeons were lined up, Mikaere was first. The adult MRI machine below the paediatric OR was booked and scheduled just before the surgery.

We signed all the forms, did all the fasting, and after a sleepless night (are hourly obvs on a healthy child really necessary?!), woke bright and early, was gratified to hear there were currently TWO paediatric intensive care beds available and we waited for our friend the anaesthetist to come by.

The look on his face when he walked in gave it all away.

The MRI Machine was broken. BROKEN. We had a choice, we could either do the gastro without the MRI or we could retry at a later date.

It was a no brainer, at the risk of it all go wrong with the anaesthetic, we’d purposely organised everything under one anaesthetic, including skipping the peg and going straight to a button.

Having the MRI under a second anaesthetic wasn’t in the plan, and we weren’t willing to risk it.

So we packed up and came home. For the second time.

When our nurse found out, she laughed. It set the tone, because of course we were frustrated but, this just seems par for the course. When I asked how frequently the MRI Machine broke, our guy said he’d never known it to be out of action, ever.

So off we go. No gastro as yet, we’re waiting for the stars to align.