Tag

therapy

May 23
2

On Reviewing the End of Life Care Plans

By | #teammikaere | No Comments

There’s an appointment I always dread and it happened last week. We met with our palliative care consultant at Hospice. She’s really lovely, has a keen sense of humour and is generally very sympathetic. She’s also incredibly practical and straightforward which I enjoy.

It wasn’t our palliative care consultant that made me dread this appointment, though. It’s that every six to nine months (acute events or slow declines not withstanding) we review Mikaere’s end of life care plan. Which is to say we go through, step by step and say, if the worst case scenario happened – at what point do we say enough is enough.

Blah. Just BLAH. My son is beautiful and right this minute chirpy and smiley and very happy kicking the crap out of some shredded paper. I hate having emotionally to go to that dark place. To remember the time he turned blue, that time he was in a seizure coma and then really think about his quality of life and the quality of death we’d wish for him. I hate that bit too. Thinking about his death. I mostly block out that it’s a very real and likely possibility. It just seems so unlikely because he’s so beautiful and alive and aware and happy. But mostly because I don’t want it to happen. It seems unlikely because I don’t want it to happen.

But then I think about to Halle Mae who gained her wings only a few months ago. I think about all the NKH babies who have passed and I know for certain it’s a possibility.  And if it’s a possibility, then having a plan when we’re not in the world of grief, having something to fall back on and not have to make those decisions when we’re emotionally struggling is a good idea.

But to have a plan we have to consider the worst case scenario and I hate the worst case scenario.  Even worse, this time it was just me. Sam had to work, so there I was. Our palliative care consultant, a palliative care nurse, our carer and a lady shadowing palliative care in hospice (because the more the merrier, apparently). A whole panel of people.

And we went down the list.

Our first scenario is an acute deterioration, which is to say “in the event of a sudden collapse with respiratory and/or cardiac arrest, where breathing and/or heart stops, we agree to”:

(it starts from the least invasive treatments)

  • Airway positioning. Yes. Do this. Reposition his airway, for sure.
  • Suctioning. Also yes. If we can get him breathing again with suction, it would be silly not to.
  • Oxygen. Yes. Yes to O2 through a nasal cannula.

These ones are all easy ones. They don’t hurt, they’re temporary and won’t cause any long term damage. The next one is:

  • Mouth to Mouth/Bag and Mask Ventilation for _____ minutes until parents are present or ambulance has arrived.

We said yes. For 5-10 minutes. And we debated every single one of those minutes, and the whys and whats and all the scenarios. It was hard not to say you do mouth to mouth for as long as you need to. It was hard to find the point to let go and that 5-10 minutes is our point. I even called Sam, interrupting his work day to help talk it out.

Because the next one?

We said no to External Cardiac Compressions.

We said no to CPR. I hate that we said no, but thinking about whats best for Mikaere rather than whats best for my emotional state… it’s a no.  With a child, cardiac arrest is typically caused by respiratory arrest (the opposite is true in adults). Which is to say, if Mikaere has stopped breathing for long enough, it’s likely to also stop his heart from breathing.

If his breathing had stilled for long enough that his heart stops beating despite our interventions that’s a big big problem, cardiac compressions are likely to break his ribs and he’s still unlikely to survive. Quality of death. That’s what I keep telling myself. Quality of death is just as important as quality of life.

The rest? They were easy to say no to.

  • No to Endotracheal intubation and technical ventilation.
  • No to advanced life support with drugs and intravenous access.

No thank you. We’ve been there before, with both those scenarios. And considering the quality of life following those scenarios… we genuinely feel it would be better for Mikaere to pass. Quality of death, quality of life.

This scenario was by far the worst one. The acute deterioration, where it happens swiftly and unexpectedly. The other scenario, a slow deterioration instead of an acute event we’d be able to see it coming. It would be increased seizures, reduced consciousness, and Mikaere would increasingly be struggling to maintain his airway.

In this scenario, we’d do everything we could, up until intravenous access (with still no to mechanical ventilation). But with a slow deterioration, we’ll have the time to consider what’s best. We’ll have time to think on whether each intervention is right. The main point here is that we’d be able to transfer to hospice on end of life care if need be. There isn’t a point where we’d say we want to go to hospice. If it was anything like last time, we’ll all know it’s time. We’ll have the support we need to decide what’s best for Mikaere.

To be fair, we can change our minds at anytime about anything on the plan. We’re not locked in, but I think if it happens it’s best to have a plan. I know how crazy it gets, how fast everything moves and how you can get into a knee-jerk reaction only mode. How you can be so overwhelmed with all your feelings that thinking logically isn’t possible. That we might be still processing our fear and our grief to clearly think about whats best for for Mikaere.

Still, I walked out of the room heavy. So so heavy. It was beautiful day and Mikaere was happy, but it was a really really tough day. I’m glad we have a plan to which we agree on, but I hate we even need a plan. I hate NKH, I hate that we’re planning for his death. It’s horrific.

So, a cure, hey? That’s what we need. I’m thinking on more fundraising opportunities – because that’s what gets me through, and that’s what gives me hope. Wine tasting later in the summer – what do you think? Anyone keen?

May 16
1

On getting fitted for a wheelchair

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When you think of a wheelchair, typically you think of a seat with giant wheels, where you self propel yourself forward. We see them on tv, in movies, we see them in hospitals, we see them on the street. That’s what I thought of when we first got assessed for special seating. A lovely lady named Mary came to make sure Mikaere’s buggy was supporting his body enough. Turns out Kai is very very tall and is swiftly outgrowing his buggy. Kai’s not even two yet and when he’s all strapped in his head brushes the top of the buggy. That’s not the main problem. The main problem is he’s very long and there’s no lateral support for my low tone baby. You can tell when he’s not strapped in, because he slumps forward, and kind of rolls to one side and his behind is on the bar.  Womp.

So. We took our very long baby and made a visit to the Wheelchair Adaptive Seating services at our local hospital.

I’m not ready. I’m not ready for a wheelchair. I feel like we only just got that magical moment in supermarkets where everyone peers in and delights at how beautiful Mikaere is and THEY DON’T KNOW Kai has this terminal and rubbish metabolic disorder. For a few moments in the supermarket, I get to feel like a ‘typical’ parent, rather than a special needs one. I enjoy the ignorance of strangers – it’s all so refreshing. No odd stares, no comments, no pity or platitudes. It’s beautiful. Strangers love on my baby and tell me he’s beautiful. It’s the only moment of what I imagine neurotypical normality to feel like.

We’ll lose that with a wheelchair. And I know,  I know the wheelchair designers try. They take a pram base and put some supportive seating in, instead of the pram seat. They give it a giant cute canopy covered in dots to try disguise it, but then they stick some medical paraphernalia on the frame. Here’s a structure for the oxygen tank, the suction machine goes here, and if he needs a vent then that would bolt on here. What happened at the end was less pram and more medicalised everything.

Just blaaaaaaaah. I’m not ready for a wheelchair. I’m just NOT.

There’s also the small matter that our current buggy (the Bob Revolution Pro) is an epic epic buggy. It’s the buggies of all buggies. I spent weeks researching when I was pregnant and we were so lucky to get it. It’s designed for running and it has suspension and it’s got three wheels. It’s perfect for all sorts of walks. Walking along the river in the dirt tracks, or mud if it’s muddy. Country walks when we’re out visiting. Across fields. Running when I want to go for a run. The wheels come off if we’ve packed the boot too full. It’s just the best buggy. It’s the best of all the buggies.  By comparison the pram base of the wheelchair is good for inside and pavements. It’s no Bob. Not even close.

While I know we’ll have to switch at some point, I know the second we do our freedom for where we can take Mikaere will be halved. Just. Blah. Blah to this. Blah to more medical crap and less freedom. But it’s not the jobs of the wheelchair engineer ladies to deal with my emotions around “upgrading” my baby from a typical buggy to a wheelchair, so I plastered a smile on my face and let them adjust the chair around Mikaere.

The chair pictured isn’t the right size for Mikaere, it was used for measurement purposes. We haven’t ordered his one yet. I’m putting it off. There is still half an inch of space between Kai’s head and the top of the buggy and while he still fits I’m going to cling to the pram we have. Hey ho. I’ll keep you posted on the new wheelchair as things develop.

Mar 21
0

An update on the superhero suit

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We got the suit! It’s only been a week so far and we’re easing into it but oh my days, what a difference. I know that it makes sense, with a supportive suit he should be able to support himself more, and he DOES. Sitting is better, it’s like his whole trunk is supported so he doesn’t have to work as hard, which means he can work on holding his head or swinging his arm or whatever it is he’s trying to do.

The only downside is that it is quite warm – making Kai warmer than usual. Difficult, with the helmet, which also holds all the heat in. We’re taking temperatures like nobodies business to make sure he’s acclimatising okay (and he is, what a champ) but it’s just something we’re aware of when we dress him in the morning. Thinking about layers and all the things. Checking his body for red marks to make sure the compression suit isn’t compressing him in a way that causes pain, or leaves red marks.

It’s weird to think about all these extra things, and what a difference it makes. It also makes me feel like we’re worlds away from the neurotypical path. Hey ho, onwards we go. I’m glad we’ve found something that helps Mikaere, that makes his life a little bit easier.

Hurrah for Superhero suits, hey?

Mar 19
0

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.

Mar 16
0

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/contact – and 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.

Feb 20
0

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?

Jan 24
0

On being open to the special needs baby groups

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Last year was a year of fear. It felt like we spent the entire year fighting fires and when we weren’t we were on the watch for smoke.

Mikaere didn’t spend much time around other people. We kept him inside his safety bubble as much as possible – no children’s group, no mummy and me music time, no playgrounds.

Nothing where children with coughs and snuffles could share their illnesses.

In places we had to go (like hospital waiting rooms) Mikaere was in his buggy with the rain cover on. It keeps out rain AND germs from other people.

We also had enough kit to manage any coughs or colds at home. The o2 and suction and the pulseox.

I think we did a great job, Mikaere only had one hospital stay due to rhinovirus, and only two a&e trips/stay at home dips (enterovirus I still hate you) which we weathered.

Considering how vulnerable he was a small wee babe, I think we did okay.

But Mikaeres a bit older now. A bit less vulnerable (we hope) and also doing really really well. So while things are good, we relaxed a little and started two special needs baby groups.

I still have the fear and question constantly whether doing this is a good call, but we’re trying. I think the benefits for socialising and regular ‘fun’ appointments outweigh the risks a little bit (we’re also a long way through term time when most kids are over their September illnesses, which helps).

One group is a physio/play session at our local Small Steps. It’s amazing. Our little group is made up of three boys, at a similar level to Mikaere (ie, not sitting or rolling) and for an hour or so it’s like a physio session but with toys and singing. We as parents run through a supervised set of activities and exercises with our babes and have a nice chat at the end. We’ve been to one session and while it was a mission getting there I was pleased we went. Pleased Mikaere responded so well. I’m looking forward to going back.

The second was a music and me time at an Enhanced Children’s Centre – another centre for special needs kids. This session was less structured and awkwardly the session overlaps with the time Mikaere’s usually napping. Still, we went. He enjoyed the end of the session and proper got involved. It was a lot of sensory action with music. The range of ages and abilities in this group was much wider.

Here’s the thing I struggle with special needs play centres (and perhaps neurotypical parents do this too at nursery, I don’t know) but it’s so hard not to do the comparison glance.

No one offers their diagnosis up front (cause would be weird – our babies aren’t their diagnosis) so it’s all taken in with a side look. That baby is head holding, but has vision issues. This one has uncontrolled spastic movements, just like Mikaere. This baby is grasping and exploring their mouth, I wonder if Mikaere ever will. This girl is going for her hearing aid, just like Mikaere does with his NG.

And while I’m side looking so is everyone else. Is your baby more or less disabled than mine?

It’s weird. We’re all carefully orchestrated by the centre staff, and we’re all focused on our children.

Before these groups, our world of special needs was defined by our drs, and medical appointments and therapies. There is no comparison, because it’s all about Mikaere. With NKH, our support group is online – so there is some distance.

These groups are all right there and I’m realising our experience and our special needs life is just one of many.

Still, I don’t think Mikaere is bothered. As long as his dummy is handy he’ll tolerate the physio and sleep through the music. Best take his lead then, right?

Jan 19
0

On being fitted for a superhero suit

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Mikaere has low tone (also know as hypotonia). He’s floppy. This isn’t anything to do with his muscles – he’s not weak. He has muscle strength and can kick and grasp and do all the things – the problem is not with his muscles. The problem is with his brain and the pathways that say hold this muscle tight. The signal doesn’t always go where it should, and as such his body doesn’t always hold itself up like it should.

In short, Mikaere has a hard time hold his posture straight and is at risk of scoliosis. Womp.

But knowing this is an issue we work with our physio to help hold it off as much as we can. Which is why we’ve tried all sorts of things, hipp helpers, a sleep system, bilateral foot support things.

Now we’re trying a DMO (dynamic movement orthotic) suit. It basically looks like a super hero suit.

It’s a suit custom fit just for Mikaere (not even kidding, the ortho lady measured every inch of him at least twice. It took a good twenty minutes to do).

The idea is that with a custom fit, increased pressure across the different muscle groups can improve proprioception (which is the sense of you knowing where your body parts in relation to the rest of you, and the strength/effort involved in moving all those parts) and lead to a better awareness of your body. Hopefully we’ll see better posture, more stability and more intentional movements.  Fingers crossed.

He’ll need to wear it all day every day, but if it means we’re avoiding (or if not avoiding, reducing the severity of) scoliosis, then we’re all in.

Originally we thought we were going to have to pay for the suit privately. Our borough doesn’t support the use of DMOs. We accepted this, and had the initial appointment (at a cost of £130) and were saving away quietly for the other £1985 that it was going to cost. We were lucky, we had a charity donate £400 towards the cost of it.

But, even better for us, is that we got referred to orthotics at our specialist hospital (rather than our local hospital) and they’re going to cover the cost! Woohoo! It means we can get the £400 returned to the charity so it can do some more good for someone else *and* our savings can go towards another therapy for Mikaere. Happy days!!

So Mikaere’s getting his first super hero suit. It’s going to be amazing.

 

 

Dec 05
1

On feeding Kai purée when he’s nil by mouth

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Our speech and language therapist (SALT) came by last week. I like her, she’s lovely. It’s her job to assess Kai’s suck and swallow, ensuring that it’s safe for him to feed. That his swallow is good and his suck solid and that we’re doing everything we can to encourage oral feeding in a manner that’s safe.

She decided that Kai should be nil by mouth. That we should put nothing in his mouth, that his suck was nonexistent (which we knew) and his swallow was unsafe. Kai would hold anything in his mouth in his cheeks. Or not even his cheeks, he’d drool it out if positioned correctly.

100% tube fed.

That was hard to hear. Also, completely impractical for us. Since he’s been ill, Kai has been maybe 98% tube fed. Part of having the ng tube is that we check each and every time we use it to ensure it’s in his stomach and not in his lungs. Every time. Because every cough or vomit could move the tube up his throat, and it could move from his belly to his lungs. If we put something down the tube and it was in his lungs, we could drown him. Nothing like an element of extreme danger when feeding your own child, hey?

But, to check Kai has to have something in his belly to aspirate – for us to draw up the tube to know it’s in the right place. If we don’t get an aspirate, you can’t just put things down the tube – there’s that risk of drowning.

So we do the aspirate dance. We reposition him, lie him on his left side, sit him up, push a small amount of air down the tube. We pull the tube out slightly and push it back down. If we still don’t get an aspirate (which is most of the time) what we would give him something orally till there was enough in his stomach to get an aspirate.

If Kai is nil by mouth, we’d need to pull the tube out and pass a new one. If we still didn’t get an aspirate (which is likely, because there’s probably nothing wrong with the tube), our nurse’s advice is to go into the a&e and get an X-ray.

Uhm.

No. Just no. I am not taking my kid into the a&e and exposing him to all the risks of the other sick children to get an X-ray and mistime all his meds 3-4 times a day because we can’t get an aspirate. It was the most impractical piece of advice I’d ever heard.

What we need is a gastrostomy, because with a gastro you know it’s in the stomach. It’s surgically placed in the stomach and has zero chance of moving with a cough or a vomit.

But we’re still waiting for that.

So, we very very carefully weigh the risks.

It’s the risk of aspirating something into Kai’s lungs by giving him something oral vs the risk of Kai catching something while we wait in the a&e waiting room, and the risk of increased seizures while his medication schedule is all out of whack while we wait on the hospital time.

There are other considerations: the risk of the tube moving into Kai’s lungs is not zero, but it is small. What’s more, if it’s blocking his airway we should be able to tell, in the same way we can tell when he’s working harder to breathe with the increased secretions of a cold. It’s not a 100% reliable method (and we don’t rely on it) but it’s something to think on.

The second is that Kai is recovering from a horrific respiratory virus. His body is exhausted and everything is out of whack. He’s lost some skills (womp) but we’re hoping it’s a transient loss – that he’ll regain those skills. What’s more, Kai had a seizure before our SALT arrived. She saw Kai for maybe half an hour, at a time when he was particularly low. Her view of his Kai’s ability to suck and swallow is based on that snapshot.

However, my perspective is based on hours and hours with Kai. Sure enough, later in the day when Kai was positively perky, he was showing much more interest in swallowing and sucking. The next day was even better, with him managing a dummy with enthusiasm.

So, I took a calculated risk and fed Kai some purée. Which of course he nommed down like a champ. It wasn’t a lot of purée, maybe an ice cube amount, and it wasn’t pre-illness standards, there was a second swallow to clear what was in his mouth, but he took just enough to enjoy himself and to get an aspirate.

This is one of those moments where I hear what our medical professionals are telling us, and I absolutely consider it, but then I look at Kai and figure out what is really best for him.

If Kai is awake and aware and doing just fine, and managing his secretions, sure, let’s try purée or a bottle. Just a small amount, because I don’t fancy tiring him out eating. But enough to get an aspirate and for him to enjoy the sensation of food in his mouth and for him to use the muscles required for sucking and swallowing.

If Kai was drowsy, or had a seizure earlier in the day or was maybe a bit less with it, I’d never try feed him purée. I might try a tiny amount cooled boiled water if I thought he was awake and aware enough to swallow it (if he aspirated, cooled boiled water is going to be less harmful in his lungs than say a mouthful of chickpea and sun-dried tomato purèe).

If I couldn’t wake him, and he wasn’t managing his secretions I wouldn’t even try the water. I’d take him into a&e for that X-ray.

I’m not an idiot, despite how our medical team dole out advice and insist they know best. My problem is they see Kai for a short amount of time, a tiny snapshot, and make huge sweeping decisions that I’m expected to follow without hesitation or argument. I’m meant to trust our team implicitly.

But they’re just people. Who are sometimes wrong, who don’t look at the big picture and who don’t have the perspective I do. They’re also bound by NHS policy, which is designed for the cost saving average, rather than the wellbeing of Kai specifically.

Becoming a special needs parent is about becoming an expert in your child, and in advocating for Kai, I perhaps stand up to our team more than other parents do. Or at least I get that impression from the manner in which I’m treated when I disagree.

So. I’m feeding my son purée when he’s been declared nil by mouth.

I don’t enjoy being in this position, but hey ho. Bring on that gastrostomy, hey?