Tag

equipment

Jul 13
1

On The NKH Car Sticker

By | #teammikaere | One Comment

Did you know the ‘Baby on Board’ sign isn’t so that other drivers will drive safer around your car? It’s so that if you’re in a car accident, the emergency team know there is a baby in the car and to adjust their priorities appropriately.

I’ve been thinking about that for a while, not sure how to help in that situation. We carry emergency medication and emergency files with us everywhere we go. But if we were in a car accident and I was unable to advocate for Mikaere… what would we do then? Mikaere is on six hourly medications – or what if he was in so much pain he started seizing? There are a bunch of medications he’s not able to have – most which are first line seizure medications.

What would happen if I weren’t able to advocate for him?  It scares me.

So I’ve been looking at medical alert seatbelt things.

Then another NHK Mum posted a car window sticker (thanks Amber!). It was pretty brilliant, so I altered it slightly and got more printed. Now on our car window there are stickers to let emergency teams know specifically about Mikaere. We haven’t got the seatbelt alert yet, but at least there’s a sign in the window to indicate something’s wrong. I’m positive that if worst came to worst, he’d be taken care of the best he could.

PS – NKH family I have extras. If you want some, £1 each + p&p. I’ll send them to you! All proceeds go to Joseph’s Goal + NKH Research.

Jul 04
1

On getting a new carseat

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Mikaere has outgrown his baby carseat. His torso is too long and his shoulders are too wide. But because he’s so floppy there are few things we need: it needs to recline, it needs lateral support. We’d also ideally like a rear facing, swivel seat that fits in the front seat.

We went up to Milton Keynes and met the special needs lady at the In Centre Car Safety place. There were exactly two seats that might work for Mikaere, and only one was in stock. Womp. We wanted to wait for the second to come in before we committed. So we waited and waited, and Mikaere grew longer and longer and eventually his shoulders just plain wouldn’t fit.

A few weeks after, we happened to be at our friends place, who also has a special needs child. They offered us their old car seat which Max has grown out of. A Britax Dualfix Römer. It swivelled, it was rear facing and it reclined. We knew the (crash free) history. Amazing. We were grateful for their generosity (because we’d at this point be getting a charity grant for a new seat that may or may not work. Either that or we’d very gratefully fall on the generosity of our family).

So we fitted it and off we went. Now, it’s not perfect. Because of the angle of our car seats (boo racer seats) Mikaere is uncomfortably sat almost leaning forward when rear facing, even when the seat is reclined (when it’s not reclined he topples forward). So we swivel it around to forward facing, which works better (but I cringe on the inside, I know how much worse it is to be in an accident with a forward facing car seat. I’ve seen that gif and I hate it).

Also, there’s no lateral support. There’s room to grow, for sure, but in the meantime it means he kind of crinkles in on himself. It means we use Ellie Ears to support his sides and a trunki to support his head, and it doesn’t work well with the helmet so we pull that off every time he goes into the car. It’s a bit of a faff. You can see how rubbish Mikaere’s posture is when he’s in it:

Don’t get me wrong, it’s a hundred times better than being in a too small car seat, and a thousand times better than some of the other car seats we’ve tried. We’re grateful (beyond grateful) to even have the seat we do. It’s just not the ideal carseat. It’s about 80% awesome.

When we’re in the world of trying to provide enough postural support to fend off the future risk of scoliosis, I have the fear. 80% awesome is about 15% less than I’d like.

The last option we’re looking at is the 2018 Kilppan Kiss 2 – the car seat we’re STILL waiting to come in.  It’s been hailed as the all supportive, all singing and dancing chair that might be appropriate for Mikaere. But we don’t want to buy it outright (at £450 a pop) over the internet in case it isn’t inappropriate. So, we’re waiting for it to be in stock at the In Car Safety Centre for us to try (they’re the UK stockists).  Except we’ve been waiting almost 9 months now. So frustrating. Another 6-8 weeks, they told us. It could be 6-8 weeks. It’s more likely to be another 6 months.

Do you know what else? It blows my mind that there isn’t a car seat service, or place that caters specifically for car seats for special needs children who require extra support. It blows my mind. Frustrating af.  Even if there was just in insert that would bump up the supportiveness of our current car seat, that would be excellent. Blah that that service doesn’t exist.

In the mean time we try to make it work, we do the best we can. I try not to get down on the idea that this something that neurotypical parents don’t have to worry about it – but I can’t help put feel they have an easier job it in regards to car seats. Hey ho. I’m trying really hard not to be too bitter. I guess I should practice grace? We have carseat that swivels. Its safe for Mikaere, and we were so lucky to have such generous friends….

It is all those things, and I am grateful for all those things, but I still feel very blah about carseats that aren’t fully supportive. Womp. The special needs life is already difficult, so things like this which require lots of money, some puzzling and lots of time calling places and talking to people add’s difficulty to an already complex life. Blaaaah is how I feel about that added difficulty. Still, onwards we go.

Ps – our OT did some investigating and there is a charity that will do an hour long assessment to help you fit a car seat… for the heavily discounted cost of £150.  Wooomp. And that’s just for the assessment! That doesn’t include I’m sure any travel times, fitting costs or extra whats-its that we’re going to need. Did I mention that we’re a one salary family now because I had to give up my job to care for Mikaere?! How are are meant to afford all this extra stuff?

May 25
1

On Getting a Second Crib for Mikaere

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We have nurses who stay up with Mikaere twice a week. Mikaere sleeps in the lounge instead of with us, and the nurses care for him throughout the night. This worked well when Mikaere was small enough to sleep on the couch, with a foam tube under a sheet to keep him away from the couch edge. Except then Mikaere’s legs grew to the point where you couldn’t sit on the couch and not get kicked.  It wasn’t until I walked in one morning to see one our elderly nurses sitting on the floor next to Mikaere that I realised this wasn’t a tenable solution.

But… I’m a bit fussy. We have a crib for Mikaere in our bedroom. A Silver Cross Ashby crib in white. It’s beautiful, well made and made in the UK. I love it. Buuut I assembled it in the bedroom and it was too big to move back and forth from the bedroom to the lounge 3-4 times a week.

So I went to go purchase a new one, except the Ashby has been discontinued. Great one, Silver Cross. The idea of having two different cribs irked the designer in me who enjoys symmetry and things that match. Very very blah.

So instead I scoured the internet, and found a lady who was an hour drive away selling hers. It wasn’t in perfect condition (seriously though, with a teething toddler what will be?) but it was close enough to be manageable. So off I went to collect it.

It was pretty solid (Silver Cross is always well made) and I was pretty happy with it. After a quick trip to B&Q, I got some non-toxic filler putty for the teeth marks and had a tin of (also non-toxic) paint colour matched and over the course of a weekend filled, sanded and painted the second crib.

And now I have two matching cribs for Mikaere. I’m pretty pleased with myself, to be honest. The things you do, hey?

It’s worked well for us, the second crib. He naps in it during the day, it’s a convenient safe place to put him down if we need to and still have him in my eyeline. And our nurses are no longer sitting on the floor.

 

 

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.

Apr 06
1

On finally finding the right bath support

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When your son can’t hold his head up, let alone sit in a bath unaided (and almost a year ago grew out of his baby bath) what do you do?

For a while we’d just get in with him. And that worked well until bath time was combined with toilet time (I’ve never jumped out of a bath faster). Then we tried a towel on the bottom of the bath, and filled the tub with an inch or two of water (imagine lying naked in a puddle). Blah. It works in a pinch but it’s not especially enjoyable for Mikaere.

We tried an otter seat. An expensive £200 seat with straps that looks like it’s made from pvc pipes. Not super ideal, because it’s got legs and because the bottom of our bath is rounded, those legs push the seat pretty high, so to cover Mikaere’s legs with water we have fill the bath to the very brim. Epic fail. All round fail.

Then our OT suggested the Bealift Chair. It’s a frame that sits on top of the bath, and lowers Mikaere gently into the bath. Perfect. She bought one over to trial (Mikaere really didn’t love it the first time he was in it)

Now, if we could have afforded to drop £420 on a baby bath seat I would have just bought it. But there are other things we’d rather spend the money on, so it was through the NHS we went. But the thing with sourcing anything through the NHS is that you have to wait for everything. It takes about six weeks to wait for the fitting appointment, and another six to get approval through all the chains of NHS management. Once approval is through, they order and at some mystery point in the future it’s delivered.

So you wait and wait and wait and wait. Then, when you’ve given up on the bath support seat ever arriving and are trying to figure out how to change out the bathtub to fit the chair, you get a call from medequip delivery, who want to deliver an unknown parcel in approximately a months time.

It arrived. Eventually. And it worked like a treat.

I think using the support was the first time Mikaere had ever had a proper, submerged bath. Needless to say he fell asleep in its warmth and screamed when it was time to come out. But he was supported and in the bath and came out clean. Win! Thank goodness. Bathing! Now a fun thing!

It’s insane how funding the right piece of equipment can alter the quality of life your kid has. It makes all the faff worth it. To put it in perspective, it took approximately 8 months to from looking to arrival. I suspect that moving forward, finding that right piece of equipment will happen a lot in our future. We’re absolutely living the special needs life.

Mar 21
0

An update on the superhero suit

By | #teammikaere | No Comments

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?

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?

Feb 08
2

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.

 

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.

 

 

Jan 12
1

On Introducing the Chair

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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.