On AFO’s. 

By | #teammikaere | No Comments

Sometime last year, our physio mentioned AFO’s – Ankle Foot Orthosis. We were using trainers + leg gaiters to help with free standing (I say ‘free’ standing, but what that really means is that we hold Mikaere up, rather than him standing in a stander).

The trainers were to stop his feet over pronating (meaning: the arches of his foot rolled inward), and the gaiters to help maintain knee extension (meaning: he can’t lock out his legs, and use his knee to keep his leg straight).

But, she thought that AFO’s – like a hard sandal that has a back that goes up to the calf – might help his standing without the need to fix his knees.  Mikaere is also showing dystonic posturing of his feet into an equinovarus position (pointing down and inwards), and the idea was that AFO’s would offer him more time with his feet supported in a more neutral position.

We’re lucky that we’re part of a tertiary hospital that isn’t currently suffering from funding issues thanks to private funding, which meant that with a referral letter from our clinician and a letter from our physio, we got the thumbs up for AFO’s. To be clear: our local community hospital wasn’t going to fund them. So we’re grateful!

They’re custom made for Mikaere – his feet were covered in plaster and the AFO’s made from the mould. We use them most days during physio-like activities, and sure enough, they help keep his feet in more neutral positions and definitely make standing easier!

They’re another set of supports in our kit. At this point – it’s heart breaking knowing my baby is almost two years over the point where most kids learn to stand. It’s unlikely he’ll ever it do it by himself, without support.

I also know that if he doesn’t stand, if he doesn’t bear weight through his legs, his hip sockets won’t form and he’ll be at risk of hip sublaxation (where his hip is partly dislocated) and/or hip dysplasia (where his hip socket isn’t formed correctly, which doesn’t hold his hip joint in place).

I know that both those options can be painful, and awful. I’d like to avoid that. So, standing. As much standing as we can do. To be honest, it’s not a lot. Finding time in our days to fit standing in isn’t easy. But every minute counts. So some days it’s kneeling against me across the back of the couch, and some days its in the stander, and some days in ten minutes in the AFO’s.

We do what we can, hey? We’ve picked a fun blue camo, in the hope that it will make them more ‘fun’ to use. Sigh. Onwards we go.

On the pink dummy

By | #teammikaere | No Comments

Mikaere still uses a dummy, he finds huge huge comfort in it. He’s even able to ‘ask’ for it by making a sucking noise. At this point, if this is the one thing he can ask for and something he finds comfort in, he can have one as long as he wants it. We’re working on hand co-ordination so he can push it back in if it’s falling out (OT loves the dummy motivation, for sure. We practise putting the dummy in a million, billion times a day).

We use NUK dummies, which conveniently come in several sizes. I ordered some from amazon (using Amazon Smile for Joseph’s Goal). Some cute, gender neutral ones.

However what came back were some cute pink chickens. I attempted to return the said pink ones, but amazon said keep them, and we’ll send out the right ones. Okay, that’s cool. Except the new ones weren’t gender neutral either. It was more pink chickens.

At that point I figure fuck it. No one cares if Mikaere is using a pink dummy, and now we have four of them. Pink dummies, just as good as the gender neutral ones it turns out. Gender stereotypes can suck it.

On the helmet

By | #teammikaere | No Comments

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 Introducing the Chair

By | #teammikaere | No Comments

Mikaere has outgrown his tumbleform – it’s a special blue that reclines. It looks like a kids chair, and it’s wonderfully blue. The tumbleform looks fairly innocuous. It’s like a bigger version of a bumbo. Something that wouldn’t look out of place in a home with children. It looks like this:

Technically he still fits in it. The problem is that he’s so wriggly, he throws himself out of it. By that I means he throws his head forward, waves his arms about and his top half topples forward. He doesn’t have the tone to pull his top half back and once gravity has hold his head continues, his shoulders and torso follow over the side of the chair and he’s lying crumpled face down on the floor. (Sidenote: I have only allowed him to fall out of his chair once. I wanted to know if he knew there was an unpleasant consequence whether he would do it again. No such luck. I put him back in the chair and immediately he threw his head forward headed for the floor).

The tumbleform was no longer safe. (Second Sidenote: yes we have straps. They’re not particularly comfortable and squawks like a banshee until the straps are off. It’s a rubbish experience for everyone).

Not having safe and confortable seating is a problem. Kai spends so much time on his back and unless he’s being held or doing physio he’s not upright. Which means unless I’m holding him he’s supine. Booo! So we talked to our OT (which was such a mission because she was ill and away frequently) and eventually, with much emailing and quiet advocating we got a chair.

I was pretty shocked when I saw it.

This chair looks like a giant piece of medical equipment. And sure, it goes up and down and has wheels and a tray and all the fancy medical support you could want. Except that it is intimidating af (despite the bee on the side). And I know, I know we already have the oxygen tanks and stat monitors and suction machines and all the syringes and medication… but you can hide those away in drawers, cupboards or spare rooms.

This giant piece of medial equipment would be living in our lounge. It outted us as a special needs family. It feels like one small step away from a wheelchair. Emotionally it’s a bit of an adjustment. But if I latch on to the idea that it’s good Mikaere, if it’s good for him my fear and grief about being further away for the neurotypical path can get on board with what we’re doing.

So. Kai has a bee chair.

It’s not perfect, and it’s fiddly to set up and his chin is almost always on his chest… but he’s sitting. Supported and safe. The hydraulics mean he can be at standing height, table height or on the floor. The wheels mean he’s easy to move about the flat (and to wheel out of the way when he’s not in it). It’s also been good for dancing in the kitchen.

The best bit is having him at the table with us at mealtimes. That little tidbit has been the nicest. He’s tolerating it better and better. It’s not perfect (trying to figure out a way to keep his chin off his chest without tying his head back is a problem I haven’t yet solved) but it’s better than lying supine many hours of the day.

So. Our first piece of giant obnoxious medical equipment. We have it.

Kai 101: The medications

By | #teammikaere | No Comments

This is a crazy one. Everyone knows Kai takes medication. It makes sense, he’s a kid with special needs and in the medical world it means fix what we can with drugs. That’s how the medical industry works, mostly. I’m not getting down on it, drugs means we can reduce Kai’s glycine levels in his blood. It means we can give his brain a break from the seizures if we have to. It means we can, somewhat, help him.

Kai is on a six hourly schedule – every six hours he gets 6-7 different medications (not including the 2:30pm stint where we give the one medication as far away from the other meds as we can).

His entire routine is set around these medications. He can’t tolerate some of the meds on an empty stomach, some require an empty stomach. so we do some meds, we feed him, and we wait 15 minutes and do the rest. Because of this Kai is eating at least every six hours, we typically do five meals a day. No snacks, just meals with additional water flushes.

Different to your typical toddler.

It’s also tricky getting the meds sometimes. Two come from the hospital (where one is ordered in from the states for us and the other is way off license use). Ten meds we can order through our gp/pharmacist, and one vitamin I order through Amazon. I do a stocktake once a month and request all the things when we’re getting low. I’m also the one in charge of asking for dose reviews. Kai’s weighed every three weeks or so by our health visitor, which dictates some of the dosages.

If I think Kai needs to go up or down (it’s pretty easy to work out, once you know the mg/kg/day ratio) I email our consultant, and cc in our community nurses. They’ll let the gp know so the next time I order through everything is on the correct dosage.

In the beginning it was overwhelming – leaving the house to go anywhere that wasn’t a five minute walk away because a logistical nightmare. I’m glad we’ve adjusted – I’m glad it’s not overwhelming anymore … it’s become a routine now. Typically I’ll do the 6am meds, and Sam will do the midnight meds if it’s just us. If we have overnight help it’ll be the nurses. During the day it’s typically me, or Sam if he’s home or the nurse if we have help. We have a little medication station where all the meds are, with some made up earlier in the day and some in the fridge. It’s pretty much overtaken our counter space, and our cutlery drawer is now shares the space with syringes. We have stuck giant whiteboard paper up, and written Kai’s med schedule where everyone can see it.

We’re making it work, because this now is our normal. A crazy amount of medication and the never ending syringe sterilising and 6 hourly meds – this is our normal as part of the special needs path.

The things we do, hey?


Side notes:


Kai 101: Purées and Eating 

By | #teammikaere | No Comments

One of the things we were never sure Kai would be able to do is eat. He lost his suck. Twice. Well, it would be more honest to say that when he was born he never *had* a suck, and had to relearn once he was out of the glycine coma. Then when the two month curse hit, he lost it. It took a long long time to regain, and even now we have regular visits with our Speech and Language Therapist to make sure Kai’s swallow is safe.

We’ve had to do all sorts of things to make sure feeding is safe – smaller (and much more frustrating) teats, external pacing (frustrating for Kai) and all sorts of oral stimulation. It’s worked out pretty good though, so far. Because now we’ve progressed onto purée’s and porridge. Which essentially means anything that I can blend with our little hand held blender and run through a sieve is fair game.

Just kidding! What special needs mama has time to blend at this point? I don’t blend. I buy Piccolo and Ella’s and let *them* do all the blending. I do the heating up and the feeding. Maybe later down the line I’ll get into cooking and blending, but not right this minute. Till then, it’s a pretty fun time right now. It means that Kai is trying all sorts of new foods and what’s even *more* fun is that he’s able to very clearly show what he likes and does not like.

Guess which one this is?

Turns out lentils are in! Alright… what about these ones?

Lamb stew is definitely *not* in.

So, feeding. It’s happening. Sometimes we feed with a spoon. That makes things tricky, because it places quite a lot of food right at the front of his mouth and he has to work harder to get it down the back of his mouth. Sometimes we feed with a syringe, squirting it into his cheeks. Apparently it’s good exercise for his tongue, and is one of those steps he needs to be able to do before we get to chewing (could you imagine if my little guy, who apparently wouldn’t be able to orally eat, could CHEW?)

I’m glad it’s happening. We offer food orally pretty much every meal, unless he’s post ictal. Which is to say, post seizure-y and completely konked out. It wouldn’t be safe to feed him when he’s that lethargic and groggy. We offer him as much as he wants – he’s quite cute at letting us know when he’s tired and had enough. I say cute, but what it really means is that he’ll point blank refuse to open his mouth, his lips all pursed together. Looks like this:

And at that point, we’re done. I’ll never force him to eat orally. We have the tube, so the rest of his meal goes down it. Easiest thing in the world. Very not neurotypical though. A friend of mine was telling me about how her 1.5 year old sometimes just refuses to eat and so doesn’t until the next meal, when he’s hungry. My brain kept saying ‘just put it down the tube’ but of course, her little one doesn’t have a tube. I don’t know how the neurotypical manage, I’m glad we don’t have that stress of what to do if Kai can’t/won’t eat.

Still, I’m pretty pleased. Eating. High fives all round!

Kai 101: The medical team

By | #teammikaere | No Comments

I’ve said it before – Kai’s disorder is complex. And the NHS is incredibly siloed, so we have a huge, huge medical team. Everyone has their little speciality, and everyone has their own plan and requires their own appointments.

Our main team consists of:

  • A metabolic consultant, at Great Ormond St Hospital
  • Two neurologists, at our local hospital
  • A palliative care consultant, at our local hospice

They are the people that order all the things for Kai. But, they’re supported by a much larger team:

  • Our GP
  • Our Community Care Nurse
  • Our Health Visitor
  • An NHS Physio and a private Physio
  • An occupational therapist
  • Speech and Language consultant
  • A general dietician, and a metabolic dietician
  • An orthopaedic consultant
  • An ophthalmology team (at a different hospital)
  • The Gastroenterology team
  • Two night nurses, and a day carer

That doesn’t include the people who help, thanks to charities we’ve been referred to, like:

  • A hospice nurse, and a hospice carer
  • A hospice keyworker
  • A portage play therapist
  • Two Homestart helpers
  • An Early Years support worker
  • A benefit and fundraising support worker via contact
  • A Rainbow Trust support worker

That’s a team of 28+ people. For Kai and all his funny little complex needs. It doesn’t include people in the A&E that we know and love, the people who work in our pharmacy and deliver the meds, or the receptionist at our gp’s office who coordinates so much so I don’t have to. Or the people who supply everything, like the giving sets or the oxygen tanks.  It doesn’t include the people we’ve said goodbye to, like our NICU team.

We see multiple people on the list every week – though typically I’ll try organise all the appointments between Tuesday – Thursday, giving us a few days to just… be us. To spend some time outside the world of medical everythings.

Here’s the thing though – I haven’t met anyone on our team who wasn’t taken with Kai. Who hasn’t loved him, and wanted to have a cuddle, and love on him.

We’re really lucky, in that respect. That our team know who they’re working for, that they’re warm and on Team Mikaere.

Hopefully, we’ll eventually be able to cut down on our services that we need as Kai grows and becomes more stable. But till then, we’re pretty happy with our team.