#teammikaere

I want to share today about this chair. It’s a giant chair. Anyone with a disabled kid would recognise it – it’s called a Ppod. We were given a grant to get one, because they’re expensive. This one is moulded especially for Kai, but even still…

The reason we got one is because Kai has three chairs. Two up/down position ones, and his wheelchair. They’re basically like sitting in a dining room table chair, with a little padding. Not very comfortable, and awkwardly, not very supportive because they need adjusting more often than we can get the reps out.

Kai’s getting older, and his body bigger. His spine is beginning to twist into scoliosis and his hips are migrating out of their sockets and his neck and top of his spine are rounding… these musculoskeletal congenital malformations are typical of NKH, but oh my DAYS does it break my heart when he’s in pain.

So we applied for a grant to get him a supportive armchair. Something comfy but still supportive. I think he likes it.

Ps – Thank you everyone for your donations for NKH Awarness Day. I feel like you’re all in our corner 💛🙏

May 2nd is NKH Awareness Day – we’re asking instead of your daily flat white, please swap your coffee today for a donation towards NKH Research so families won’t need to worry about NKH moving forward. Please. Please donate. £3. £5. £15. Whatever you are able. #linkInProfile⁠

Justgiving:
https://ift.tt/fi0gqe4

#medicallyfragile #nkhawareness #nkhcansuckit #disabilityLife #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #seizures #teammikaere #nkhAwarnessDay2024 #someoneFundACure #nkh #ifhnkh #metabolicdisorder #glycineencephalopathy #cureNeeded #disabledKid #disabled #disability #complexmedicalneeds

This is our sixth NKH Awareness Day. When the first one came around I was in shock, still really grappling with our life, still, if I’m honest, in denial that my baby was even disabled (despite having just been discharged from hospice on end of life care… trauma coping mechanisms are wild).

This year, god I’m tired of asking. It feels hard to keep holding out my hand to ask, repeatedly. I’m skydiving, I’m selling books, and I’m asking people to donate, I’m asking people to run – I’m a never ending bucket shaker, shaking my little heart out in sheer desperation.

Because when I’m shaking my little ‘please god HELP ME’ bucket – what I’m not sharing is the seizures. The screaming, the pain. The days where my boy doesn’t wake up. The WEEKS he’s had off school. The panic when the sats monitor goes down to 80, and I’m yanking him out of bed to try get him to breathe. The cough that causes him to vomit his meds, retching until his stomach is empty, causing us both to be in tears. Him, because of discomfort, me, because I know I can’t give regive the meds and now he’s going to be in so much pain, he’s going to have more seizures and it’s going to be a shit time for everyone. This isn’t a phase. This is his life.

I’ve been trying really hard to give him his dignity, because people on the internet don’t need to know, in real time, the hard. But it IS hard. And the harder it gets, the more I start shaking little donation bucket because something has to CHANGE. And I can’t fix his genes, I can’t take away the seizures or the vomiting or the pain. But what I can do is ask for donations (again). Because here’s the thing, if I make £15 for NKH research, that’s not nothing. That is a tiny inch, in the right direction.

I also think this is going to be the last time I ask for donations on NKH Awareness day you guys. This is so hard. SO HARD. You guys have been in our corner, so wonderfully supportive, but I’m tapped out. This is an emotional week, remembering kids who we love, who are in pain, who have died. So, I guess, please donate? For the last #nkhawarenessday?

Facebook:
facebook.com/donate/320932097682656/

Justgiving:
justgiving.com/page/nkhawarenessday2024

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! 🙂

Getting out can be a huge faff. Sometimes we don’t manage it at all and Mikaere can spend days inside without leaving. Part of that is we have a limited amount of awake time to work with, which can be taken up by therapy. Sometimes he’s not up for it, sometimes there is too much going on and his nurse isn’t confident enough it take him out without us, and sometimes it’s just too dang hard to manage.

Which is just, a bit shit. It’s a bit shit. Cue Mama guilt because I really want to manage this, so he can go outside and enjoy not being in the same space for days on end. Life has gotten significantly harder now Mikaere isn’t a small, portable wee toddler. There’s a lot of prep work trying to figure out if a place has accessible paths or accessible door frames or step free access. Are we going to be out long enough that he’ll need changing? Is there a changing places facility where we can change him? It feels like a constant negotiation with the world, and a fight with the emotional/mental effort capacity that we have.

But is also means when we finally do go out (often somewhere local and accessible that we know) it feels like a win. It feels like a HUGE win! Because we want him to be able to enjoy all the things. But also, I hate that it’s like this. I hate that it’s hard.

Anyway. We made it out. We fed the birds leftover bread and hoofuckingrah! We did it!

Todays adventure: we spent this morning at @wwtlondon. Their playground isn’t even remotely disabled child friendly or accessible – disabled kids like to play too, you know (though we got a bit fast and loose, pulling Mikaere out of his buggy and onto a mat so he could go down the slide). Also, there was no changing places facility (which 🙄😭).

Still, it was nice to be outside. We listened to the wind in the reeds and sound of the ducks, he held his hand out and got splashed in the splash pad.

We did our best to make it work, is what I’m saying. We made it out, we’re adventuring!

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#inaccessiblePlayground#ableism#disabledKidsWantToPlayToo

Following up on yesterdays sensory win, here we are today with HATS! (Yes, we’re all very fancy. It’s not like we don’t have an entire room full with expensive sensory equipment 🙄).

But you know what? Mikaere loved this morning. Dressing up with beads and hats and “kings shawl”, looking in the mirror, us making a big fuss – it was magic with many smiles and lots of delight.

Physio is not fun. Being forced into positions and moved about and not having a choice in what is happening to your body – that is not fun. Stretches can hurt, and Mikaere isn’t able to negotiate or talk back or even say that hurts, I’ve had enough, or any of those things you and I have the option to say. There’s no autonomy for him. No independence. We watch him closely to try read his body language and facial expressions, but that’s not the same. It’s not even always accurate (could you imagine getting through the day just communicating with facial expressions? How well would you be understood, do you think?)

And so we try to make physio fun. We try. It’s not always successful. He’s not always keen to have bells shaken in his face, or bang the drums or whatever. It was nice today to change it up, to do something different and joyful.

And I forget that it doesn’t have to be fancy. Some beads, an old hat, a piece of large fabric and a mirror, that’s what worked today.

So, hurrah for hats! What magic sensory tricks are you guys using right now? Share your tips and tricks with me, so I can try them with Mikaere?

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#physio#sensoryPlay#hats