On the Delichon Delta

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A few months ago we drove down to Fordingbridge to visit Delichon HQ to see if the Delichon Delta might be appropriate for Mikaere. We were having such issues with the Hoggi Bingo, don’t get me wrong, it’s a great supportive chair but for indoors and pavements only. We are not an indoors/pavement only kind of family. So, the hb was ideal for school but rubbish for any of the things we wanted to do. I was wildly unimpressed after losing the flexibility of our old buggy (and generally disillusioned with the world that actively excludes disabled people).

So, we went down to Delichon and put Mikaere in a bunch of different chairs, and had warm feels about the delta. It’s not the special tomato, it doesn’t have the swivel front wheel, and it doesn’t recline BUT that wheelchair doesn’t exist at the size Mikaere needs it. The Delta was a significant improvement on the Hoggi Bingo – it manages grass and dirt and off road hills, it’s good for running and has a bike attachment so we can all ride together. We were pretty pleased, except… it’s expensive (as it should be, it’s a quality piece of kit). But womp. So we got a quote, and went on our merry way. We talked to a handful of charities about funding and crossed our fingers. We borrowed our friends delta for our trip, and was quietly hopeful that we might one day have our own.

Well, thanks to the Elifar Foundation we found out this week they are going to cover the cost in full (!) and Mikaere’s very own Delichon Delta has been ordered!!! We’re very excited about the freedom it will afford us, and the adventures we’ll be able to go on. We’ll see. We’re excited and grateful, watch this space!

On Blackwood Forest

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A few weekends ago we took a holiday out to a cabin in the English woods. It was an “accessible” cabin, but I imagine it’s accessible for those who can self-transfer, rather than the full spectrum of those who are disabled.

Finding places we can stay is becoming increasingly more difficult (seriously, how hard is it to install a hoist over a profiling bed, and into a bathroom with a shower trolley?) but accessibility rant aside, it was a lovely weekend! Mikaere enjoyed being out and about in the forest, and there were hot tub swims and we ate a silly amount of icecream.

It was a delightful break, and we were stoked to just be in a different place. Mikaere loved it, and had such a great time. I also think there’s something to be said for getting him outside. It’s not always easy at home, so to be able to wheel him out onto the porch which faced a private bit of wood was lovely.

We weren’t able to use his regular chair on the off-road walks (seriously, the hoggi bingo awful for off-pavement) but we managed to borrow an off-road trail chair which was perfect (hurrah delichon delta!)

As Mikaere gets older (and bigger and less portable), it’s clear the world is becoming less accommodating, less accessible. But I’m pleased we managed to do this trip, that we made it work, that we were able to make some beautiful memories. Hurrah for holidays, hey?

PS – More photos over on instagram @teamMikaere

On Standing

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This kid. The heat has been awful the last couple of days, hey? We’ve been sequestered inside in front of the aircon and fan, with the cool mat and paddling pools and spray bottles to mist. We’re all very relieved the heat has broken!!

Also, how tall is this kid now?! We don’t have a standing frame (because it’s massive and doesn’t fit in our apartment), but we do have a walker. While Mikaere doesn’t walk in it, it’s great for supportive standing. He’s not in it often enough if I’m honest (standing is one of the first things to be put aside when we’re under pressure) but we do the best we can considering. He’s pretty comfortable, if he can sleep in it, right? 🤣 I really wish Trexo Robotics were available in the UK, but hey ho! I’d love to see my boy be able to get around independently.

On Getting Glasses

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Look at this sweet face! Someone got glasses. It’s been a long time in coming – a face to face ophthalmology meeting wasn’t ideal during covid. We talked about this already, in a previous post. About how everyone else was getting on with life as if it was all back to the regularly scheduled programming, as if covid wasn’t even a thing.

Well, part of that is ophthalmology requested a pair of new glasses for Mikaere. Aaaand then the spectacle dispensary ended up being closed on alternate days (because covid). After weeks of trying to get an appointment, we were told it was closing temporarily. (My silence at hearing this could easily have been translated into WTAF). Which meant that our alternatives were to take Mikaere out to Islington (a good hour in the car) or to go into a store (with all the people not wearing masks).

Awkwardly, we chose a specsavers that was close by. We had our voucher and I was hoping for easy and local and swift. We were all wearing masks (including Mikaere, who was also behind his rain cover) and honestly, I was super anxious about the whole deal. But, we lucked out. The first visit was a dream.

There was only one person in there, who helped us pick out and fit glasses. He was happy to chat and share when he last did a lateral flow test (that morning, it was negative). He was wearing a mask and we watched him sanitise his hands before coming over to us, stopping a socially distanced appropriate distance away. We tried on a few (which was hilarious and actually, a fun bright spot), ordered a pair and went on our merry way.

Picking up was less delightful. There were more people in the store, who weren’t wearing masks. One, particularly ableist lady made sure to tell me what the government guidance was on masks if your double vaccinated, after I asked her to move out of the way because she wasn’t wearing a mask, and I didn’t want to walk by her. 

My response was mostly a string of profanities. I’m not the most eloquent when I’m sleep deprived and scared for my kids health, but can I please repeat for you – just because you’re double vaccinated means you can STILL get Covid. You can STILL transmit it to others – like Mikaere. Who can’t be vaccinated. For whom Covid would be disastrous. Recognise that the UK government doesn’t care about vulnerable people and that whenever possible – PLEASE STILL WEAR A MASK! Please still socially distance!

I was shaking after. Honestly, some people are just awful. We were lucky though, because the optometrist was by contrast, an absolute delight. Yannick, he introduced himself to us, and to Kai specifically. He was double masked, volunteered his last test information, wore gloves and an apron. He even made a point to tell me he was sorry for that lady, that he understood, even before I explained how vulnerable Mikaere was. He went a long way to making me feel better about humanity – even after my display of less than articulate obscenities.

And afterwards, we were able to go home, with a new pair of glasses that fit.

I’m finding it really hard to manage in this new world, where every stranger feels unsafe, like they might be a risk to Mikaere. They might have Covid, and they might pass it on and just – he’s so vulnerable. So so vulnerable. Trying to balance to risk between something as simple as encountering people at a specsavers and Mikaere’s need for glasses is just – it feels impossible. The bigger view is that obviously I’m trying to keep my son safe in a world that is increasingly less safe for him. Relinquishing that idea of control – that I can keep him safe – feels unnacceptable (it’s my job as parent to keep my kid safe!) and I just… it just feels like another thing. Just one of those awful things that happens when you parent a disabled kid – the world is unsafe for them and you can’t protect them, and that heartbreaking impossible feeling is… its our everyday right now.

Hey ho. Onwards we go! Now with glasses!

On the changing table

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Speaking of equipment, we got this behemoth changing table put into our bathroom. It’s great, in that the bathroom has a hoist and we can now hoist Mikaere from the changing table to the bath. That changing him is significantly easier and all in all, it’s a huge improvement over the bathroom floor.

It’s just – it’s so big. The installer didn’t quite install it all the way over, and so it’s difficult to slide in and out of the room when the table is down. We also had drama with him wanting to do the electrics – so while you can plug it in to the mains to move it up and down to an appropriate height… you have to do that with the door open. It’s so frustrating.

At this point we’ve been too busy to chase the small details – so live with it unplugged. But honestly, I wish the installer had just done what he was meant to do, and had done it properly. It’s so hard not being able to trust people do things right, you know? And now we’re in a position where we have to pay to have everything sorted out.

Still, not changing Mikaere on the floor is a win, so I guess we’re mostly in the positive?

#greatChangingTable #stupidInstaller #disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh

On a Useless Hoist

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We have this stupid portable hoist in our living room. It’s not long enough to actually be of use (it fits over Kai’s bed, and then literally just the half metre next to it). We used it initially getting him in and out of his crib, when we had the crib, but now he’s got his bed it’s just… it’s not a good fit.

We’re still waiting for a ceiling track to be put in

I can’t wait to get rid of it, honestly. It doesn’t belong to us, it’s from the council. So I have to organise to have mediquip come and dismantle/pick it up. But to do that, they need to come in. And with cover, I’m not keen. So we have the big giant (but not giant enough) hoist was just sitting there, not being used.

SO, I’ve pulled it out and now we use it as thing to hangs toys from. It’s huge, and silly but also, kind of fun? It’s definitely not what it’s meant to be used for.  Hey ho, we’re making it work for us!

#stupidHoist #disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh

On Ophthalmology

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As everyone here in London is just Getting On With Life as if cover wasn’t a thing, there was pressure to take Mikaere into his Ophthalmology appointment. You can’t really do ophthalmology over zoom, and it’s been two years so… yes. With much anxiety and mask wearing (even Mikaere) we went and saw his ophthalmologist.

Mikaere has CVI (cortical vision impairment). We know that. It’s not clear what he can see, what connections are getting through to his brain. There’s also an issue with the tone of the muscles around his eyes, which means one eye floats in a bit (it’s called strabismus). We also found out this time that his eyes are oval shaped – called astigmatism. That’s not NKH related, as Sam has that too. Mikaere is also long sighted. So it’s all a bit complicated, but mostly fine.

The lovely ophthalmologist looked at Mikaere’s eyes, and shone various lights and made some decisions. Mikaere thought it was generally hilarious, and was very cheeky, holding still just long enough for her to almost get her readings, and then turning away with a laugh (he thinks he’s hilarious!)

Anyway, the short of it is Mikaere’s getting glasses. Again. He actually had glasses briefly almost two years ago, but after a while he refused to wear them. The ophthalmologist then said it’s likely that his eyes changed shape and the script was likely off. He was right, I guess.

But awkwardly because of Covid, the spectacle dispensing office was closed, and so we need to wait for another appointment to have a fitting.

Still, I feel like it was good to go, and novel for Mikaere to be out and about and meet people outside our bubble (!)  I guess stay tuned for the glasses reveal?

#disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh #spectacles #strabismus #astigmatism #eyeCare

On School Transitions

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One of the changes that happens now is Mikaere’s therapy is done at school. Where I am not, which means I can’t be there to advocate for him. This here is Mikaere in his stander at school. This is not the stander we trialled at home. It doesn’t have head support he needs, or support behind his elbows. You can see how his chin tilts up, which is problem, because then secretions pool in the back of his throat which means more gagging and vomits and breathing difficulties. I can’t see where the strap is, in regards to his tube – is it rubbing? Is it accessible? I can’t see how he’s moving in it. Is he comfortable? Is he extending against the straps? Is anything rubbing? How is his feet? Are they turned out? I can see it’s not the superman pose we set up at home (because it’s better for hip abduction). And I’m so frustrated. So frustrated that this was done without me.

Because of course it’s now all going to be done without me. He’s at school now. I’ve been told repeatedly that his independence is important, for us and for him, and that letting him have that is necessary.

The tug here is that I genuinely feel like no matter how great his team is (and they are great), they are not as great as me. They don’t know him as well, they don’t know about NKH as well as I do, they’re not able to anticipate like I do, and they are not his parents.

There is also this frustration that if his time is limited, he’s spending it with people who aren’t his family. With people who aren’t US. They are getting all his awake moments, all the beautiful interaction and fun. And we get the tired Mikaere, who is so exhausted after school that he sleeps.

I’m struggling with this transition. There are (obviously) benefits (for us and him) that he goes to school and we get daily respite, but it’s not a black and white situation. I don’t know how to advocate for him when I can’t see what is happening with him. I’m not the one making decisions for him, and I’m not the one ensuring that he’s getting the best out of his time there.

Instead my mama heart is trying to be okay with ‘good enough’. This stander is not the one that we trialled. It’s not set up the way that I would set it up, and it’s not as supportive as I would like. But. But he is standing, which is good for him. It’s good for his hips and muscles and digestion and I bet it feels really good.

I hate this. How do I advocate, and how do I settle for ‘good enough’ when for the past five years I have done everything in my power to ensure Mikaere has everything, and more that he needs?

#disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disability #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh #transitionToSchool #standingFrames #hateThis

On Standing

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Mikaere has outgrown his stander. We have a walker, but it’s difficult to get him to weight bear in it, and still keep his body in alignment. It’s much easier to practice freestanding with gaiters (to keep his knees locked) and AFOs (to stop his weak-never-has-to-weight-bear ankles from collapsing). The downside is that it requires two people to support him upright in this way, so when Sam has a gap at work and Mikaere’s in a good place, we do a moment of therapy. We dance to some tunes, and wiggle our hips and raise our arms and move our bodies.

It’s not the hour in the stander the physio wants, but it’s fifteen minutes or so of actual standing, transferring weight and proper uprightness. I’ll take it. We do what we can.

On a walker update

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One of the things about the special needs life is the equipment cycle grind. Mikaere has SO MUCH EQUIPMENT – from supportive postural equipment (a low/high chair, the stander, the gait walker), to supportive equipment (the bath support, a bouncer, a tumbleform) and wearables (afos, gaiters and a compression suit). That doesn’t include the ‘extras’ (the ups, a giant wedge, the sitting bench, the giant fibre optic contraption etc etc)

Needless to say since lockdown he’s outgrown everything. Usually we’d be in appointments and adjusting and ordering as he’s grown. But we haven’t had any in person measuring appointments since Feb.

So his stander is no longer safe for use and his afos dig into his feet and we sent the high low chair back when we realised he never sat in it because it wasn’t safe (seriously, how do you stop your kid from scooting his pelvis forward, so he won’t choke himself on the chest harness?!).

And then we realised he’d grown too tall for the walker… I mean, I was unprepared for all the growing that was going on.

There’s a theory that NKH kids grow and age faster due to some metabolic imbalance. That the majority of NKH kids are in the 99th percentile for their height, and hit puberty well before their teens. Mikaere is holding true to that sentiment so far. He’s a giant for his age!

Anyway, the walker. You’ll remember that we were gifted the walker by Jirraffe (who have been SO KIND to us!). We’d already secured funding from Elifar for said walker (another lovely charity who have been super super kind) and Elifar agreed to hold the funding for when he’d outgrown it, so we could get a second walker (seriously, how kind is that?!)

(Pictured here without the saddle, and basically used as standing support, with AFOs and gaiters, because he’s outgrown the stander completely now. The chest harness is under the blue support pillow).

So, when it was clear the chest harness couldn’t be raised any further, his legs were too long for the frame and he needed the extra support, we called Jen, our amazing Jirraffe Rep and had a chat. She loaned us the next walker up, we did an adjustment fit via video call and let Mikaere settle in.

Side note: as a mama, I’d forgotten that boys have testicles and it matters how you sit when you’re on a saddle. So that was a fun learning curve for everyone. (If you’re cringing, yes, that’s how I feel. Oh the guilt (!) because I forgot about baby balls!)

After two weeks it was clear that the new walker was a good fit (and almost better than the stander for weight bearing!) and we pulled the trigger.

Mikaere’s brand new gait trainer arrived over the weekend. It’s blue and it’s suuuper shiny! We’ll set up an adjustment call and he’ll spend some time in it every week.

The best bit – and Hayley beat me too it yesterday – was that we were able to pay forward Jirraffe’s kindness. Evelina (of @dear_evelina) goes to the same special needs playgroup centre as Mikaere, and I’d happened to see on ig that they were exploring walker options. I offered Mikaere’s walker that he’d grown out of and was pleased as punch when they accepted.  I’m so glad it’s gone to another family who will appreciate it, and use it. We’re stoked, and we know they’re stoked too, so high fives all round 🙂

So while the stander is out and who knows how long it will be before we can get new afos and a new Lycra suit, and we’re still waiting to hear about supportive chair options (and funding for a new bed and a bathroom changing table and hoists and and and), but we have a walker! Grateful for the small things. We’re pretty pleased 🙂