#teammikaere

After Mikaere’s metabolic appointment, we hit up a nearby splash pad so our youngest family member could burn off some energy. It’s not easy trying to manage the very different needs of my babes, and splash pads aren’t very inclusive… in that mobility equipment is designed for very singular situations. I don’t want Mikaere’s wheelchair to get soaked, because he has to sit in it all the way home. Wheelchairs are expensive, and fiddly, and we don’t have a spare one that’s appropriate for water play. The splash pad didn’t have hoists or things, to sit on while you splash, or a changing places facility… so we settled for wheeling him close enough for leg splashing (which he was curious enough to start with, and then decided that leg splashing was not for him).

This wasn’t meant to be a Debbie downer post (although it’s hard not go down that path when talking about accessibility… the world is widely inaccessible, and accessibility is rarely prioritised or designed for as standard) BUT it’s hard to be enthusiastic about a little leg splashing when you can see the experiences of Mikaere’s neurotypical peers. Oof.

Anyway. We went to a splash pad and it was cute and there were fountains and I genuinely wish accessibility was designed into these things as standard.

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #splashpads

We’ve recently been granted a wrap around service – which is transport to and from Mikaere’s school. Honestly, this is such a genuine blessing. We were doing manual transfers (lifting Mikaere out of his wheelchair and into his car seat) which… he’s not a small kid, you know? It was hard for him, and hard for us. It was very physically hard for everyone, and definitely had some negative impacts on Mikaere’s hip dysplasia.

So being granted school transport, that’s wheelchair accessible (and therefore doesn’t require any manual transfers) has been GAME CHANGING for us.

There is a bit of a faff around how many people are involved (between school, the council, the service, the driver, and us… communicating changes requires some coordination)
BUT I will take all the logistic faff for the ease and comfort in which our guy is taken to school.

We’re pretty lucky, I know not every family is granted this kind of service. I know there is so much fight and battling for services, so to be granted this, a service which is so desperately needed and quite drastically improves Kai’s quality of life (and dare say ours, too), I’m grateful.

I cried as I waved him off the first time. Which feels stupid, because obviously he’s been going to school for the longest time. But I did. Thankfully, his driver is the NICEST person. It feels like we really lucked out.

#SchoolTransport#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#disabilitySupport

ID: There is a white taxi cab side on, with the door open. You can see Mikaere in his wheelchair through the door. Behind the car is a building with glass windows, and a blue sky.

One of things that happens as Mikaere gets older is the scarcity of *things* that he needs. Things that were wildly available when he was wee babe don’t exist in big kid sizes. Like bibs, bibs that are *waterproof* and don’t leak through to his shirt (I’m looking at you, M&S adaptive bibs).

I got fed up. Usually I’m all for paying for convenience, but it actually has to be convenient. The ones we need are so expensive, or ugly or the shipping was horrendous or there weren’t that many options available etc etc. So I pulled out the sewing machine, ordered some fabric and off I went.

I am not a seamstress. The last time I properly sewed anything that wasn’t clothing for a bear (a one-off project for Kai’s class), was high school. I don’t how the right techniques to finish a bib, but you know what? My kid has at least one bib, that’s the right size, that keeps his chest dry 🙌🙌🙌🙌

I attempted to make button buddies too (a small fabric button that goes around his gastrostomy to keep it dry, so it doesn’t granulate. They’re also stupidly expensive and we keep losing them to the same monster that steals our socks).

And then I figured out why button buddies are so expensive, and it’s because they’re a bitch to make. And I made the mistake of lining them with micro fleece (if the purposes of the button buddy is to soak up the liquid coming up from the stoma, then using water proof fabric is a terrible idea). BUT – I gave it a go, my third one was better than my first, and I’m going to scavenge from the rubbish M&S bibs to make the fourth, so you know. I’ll get there. I’ll not be defeated by a stupid button buddy.

So this is where I am, parenting wise. I’ve entered the sewing stage out of desperation. Wish me luck!

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit

Hug your loved ones today, okay? Yesterday we went to a pub lunch by the river, cause the sun was out and we had some time. It was glorious and this guy was so happy to be out. It felt like we were memory making. I’m holding so tight to this picture with his grin and the joy.

Today Mikaere’s not 100%, there aren’t any smiles and I’m leaving him with Sam and his grandma so I can go say goodbye to another wee NKH Bee who has gained her angel wings. As a friend said, there’s another star in the sky tonight. She’s joining a constellation of NKH kids, which is just…

NKH is so rough. On our little bees, on us, on families and communities and just, hug your loved ones, okay?

#nkh#nonketotichyperglycinemia#glycineencephalopathy#nkhawareness#ifhnkh#metabolicdisorder

As Mikaere gets older, there are an untold number of things that need managing. All sorts of things, usually as a result of something caused by NKH.

One of the recentish things that has come up is that his thumbs abduct. Essentially, it means that his thumbs cross inside his palms, making them useless for any kind of functional work (like grasping). This is partly because of the way his muscles work (as a result of his deteriorating CNS thanks to NKH).

The OT pushed for neoprene splints, but they’re heavy and make his wee hands sweat (and then the splints smell and it’s gross). It’s a whole thing.

So, we sought different advice and are using kinseo tape to achieve the same thing. Honestly, I don’t know why more therapists don’t use it. It’s significantly cheaper than a splint, more comfortable and more versatile.

I am frustrated that it’s a solution we had to seek out ourselves (our OT service was very clear about how they don’t have training on kinseo tape, and wouldn’t be willing to get training, but it “appeared” to work for Mikaere’s thumb abduction, so they would “monitor” things. Eye roll. They also didn’t have an alternative to splints, so 🤷🏻‍♀️).

Hey ho. It’s a solution that works for us, and I’m pretty pleased to have an alternative to splints (thank you Hayley!) Anyway, thumb tape. It’s a thing we’re doing 🙌

#paedatricOT#kinseoTape#thumbAbduction#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit

This kid came back from school yesterday with a crown he’d made. Very sweet (bar the nuances around the coronation). I’m grateful he’s engaged and happy at school, my mama heart! 💛

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh

Earlier this week we did something I wasn’t sure we’d ever be able to do. We took Mikaere to a theme park and rode some rides. I mean, he can’t sit independently, so I’d written off any kind of theme park. It felt impossible. Would there be disabled facilities? Would Mikaere even enjoy it?

After much encouragement (<3 @project_gogo), we went to Chessington. We booked tickets for the week after school started on a day it was meant to rain (so it was mostly empty). They had a changing places facility and we signed up for the Ride Access Pass (which meant we could wait in the just-us disabled queue). We worked out which rides that Mikaere might be able to go on (they have a great accessibility PDF) and there were maybe 5 or so rides we thought he might be able to go on.

Mikaere wasn’t having the best day, so we limited ourselves to two rides: Elmer’s Flying Jumbos, and the Sea Dragons. Elmer’s didn’t quite live up to our hopes, Mikaere was very much in the “wtf is going on” camp. On the other hand, the Sea Dragons (which was significantly more roomy) was a huge hit, with many smiles.

The bonus was they also had an aquarium + a zoo! We did the Monkey Walk (a tiny path in the Marmoset enclosure so they can get fairly close if they choose to) which was lovely! Because it was just us, we had the opportunity to stop + Mikaere was very curious!

It didn’t feel like a washout day, knowing he could only go on a handful of rides, thanks to both the aquarium and the zoo (which is good, cause even though you can get a carers ticket free, it was expensive). It was a lot of work + prep to get us there, but we did it.

It did feel a bit bittersweet. He can only go on these rides while he’s small enough to be lifted, while he’s portable (he’s significantly less portable than he was). Once he’s too heavy this will be one of those things we can’t do. Which, womp. Because where are the rides you can get a wheelchair on? If you can strap a wheelchair down in a taxi, surely you can manage it on a ride?

Still, it felt like a win. Like we were making memories + being adventurous. It was a good day!

Independent plaaaaaaay, we’re doing it! There is very little opportunity for Mikaere to play by himself, so when we find something that works for us, we’re in! It’s always fun finding new ways to play with your current kit. We’ve had these fibre optic lights for a while, and stringing them up to the hoist was such a win. Whatever works, hey?

We took Mikaere on the river boat the other night, on what was meant to be a pre dinner walk and ended up being an impromptu trip down the Thames.

To be honest, he couldn’t have cared less, but we had a great time. I’m glad both piers were accessible, but the boats, not so much.

Wheelchair users aren’t allowed to sit outside like everyone else (wtf), and on the first ferry there was a tiny alcove we could slot Mikaere’s wheelchair into, but on the return trip there was no designated wheelchair area. There was an open seating area kind of out of the way at the front, but we had to ask a gentleman to move as there wasn’t enough space for us and him (which was awkward).

I mean, it’s like they did a half job thinking through accessibility. How to get on, but not how disabled people were going to manage once on the boat.

Anyway, casual ableism aside, it felt like exploring our own neighbourhood, which was well good!

Yesterday we met some friends of ours outside, in a local park. We’re widening our bubble slightly, which has been so good for us and for Mikaere.

Anyway, the highlight for our guy definitely was meeting Pepper, who is JUST the sweetest wee thing! She’s very soft and was happy to have some pats. Mikaere was very curious and there was a lot of smiles and signing more, so that was very sweet.

We’re holding tight to the teeny tiny moments of joy right now, and it’s a very intentional thing. What will bring Mikaere joy today? What is going to make his day a good one? What are we going to do? I’m glad that yesterday it was friends and doggie love and walks outside.

It was a pretty nice way to spend a Sunday! 🙂