Just some balloons and a happy boy on your casual Sunday afternoon. This is what weekends are for <3
We took Mikaere Ice Skating at Hampton Court Palace with @sschospices – it was a really wonderful evening. He had one of the helpers zoom him around really fast, which was great fun! The lights were also really great, sensory wise.
Also, it was really nice to be with other families like ours. To see other kids in wheelchairs, with tubes and bibs and just, to have no one stare, or be giving our guy the side eye. For him to be out sqwaking his best, most joyous sqwak and not a single person batted an eyelid.
It was also pretty nice for me, as a parent, who is rarely going to be away from her babes to get to ice skate. I genuinely enjoyed out being on the ice, skating about. There’s no way I could go without it being a disabled family friendly event like this, and I’m glad I got the opportunity!
Despite the simultaneous meltdowns by the other two (and when we lost our nurse temporarily), it was a really wonderful night, and I’m grateful to @sschospices for organising it.
#makingMemories#christmasTime#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#iceskating#hamptoncourtpalace
We’re always trying to find moments of joy for our boy. NKH is terminal, and we’re so lucky to have had the time with Mikaere that we have, but I’m so aware that time with him is precious. Finding sensory activities that make him smile (like foot baths!) is such a win, you know?
Considering how difficult the rest of his days are, with the seizures and mobility pain and just, the everyday frustrations that come with not being understood or being able to communicate your needs… I’m glad that there are intentional moments of joy in his days too. That smile, hey?
#nkhawareness#nkhcansuckit#nonketoticHyperglycinemia#glycineencephalopathy#raredisease#nkh#ifhnkh#glycineencephalopathy#cureNeeded#complexmedicalneeds
We made up a giant bowl of water beads for sensory play this week. I mean… we didn’t intentionally make a giant bowl – those things grow really big! (We made enough to be able to give away to friends!)
But it was a fun sensory moment that worked pretty well. We’re pretty well versed in sensory play, and this was great, they looked pretty, were easy to make and manage and also, apparently they last for ages?
Anyway, Mikaere was intrigued and that giving him moments to explore a novel experience is such a win (also, they make less mess than jelly, or cold cooked spaghetti 🤣)
X
#sensoryPlay#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit
We were at the hospital today, getting a hip X-ray for Mikaere… it’s something we’ve done every year, knowing that kids with NKH are at risk of hip sublaxation and dysplasia because they don’t weight bear like neurotypical kids. It’s a thing, especially as NKH kids get older. It can cause significant amounts of pain and discomfort when things aren’t in the right spot, and when you’re nonverbal and can’t tell people when you’re in pain – as his Mama I worry.
Also, our guy isn’t a little babe anymore – he’s not easily portable and I can’t just pick him up to move him around. We had to wait at this appointment for the radiologists to get their mobile hoist, and then there was a moment when they realised the X-ray table doesn’t have gaps under for the wheels on the hoist to fit, so only part of the table was accessible… we made it work but it was only possible because he’s a child, and you can kind of tug the sling under him to reposition… but if had been an adult, it wouldn’t have worked (or rather, not in a dignified or safe way. I’m endlessly infuriated at the lack of accessibility and how designers just don’t think about non-ambulatory people). As far as appointments go it was a chill one, but as Mikaere grows I worry about all the things he has to face in a world that’s wildly inaccessible.
Anyway. Hip X-ray. It happened! Now we wait to hear from ortho and hope for a 👍
#nkhawareness #nkhcansuckit #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #glycineencephalopathy #cureNeeded #complexmedicalneeds #fundraising #teamMikaere #hipsublaxation #hipdysplasia
Yesterday we took Mikaere trick or treating, just a small little something in our building – a handful of apartments said they’d be okay with some visits from kids and so we went floor to floor with two other families, looking for apartments with Halloween pumpkins on them. It was very sweet, our little Clark Kent had a great time!
I’d discreetly visited the places we’d planned to visit beforehand to drop off sensory toys and things for our guy, so at each visit there was something for him that wasn’t candy he couldn’t eat. He got SUPER excited with each little treat, ringing his bells, signing more. It was very, very sweet! He also got good at anticipating the knock, followed by a loud “trick or treat!”
We’re in general not a huge Halloween family, but this felt like SUCH a win for our little guy. It was small, and accessible and like, just at his level of engagement. Literally perfect!
Happy Halloween, everyone 🙂
#halloween #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit
One of the things we did to celebrate Mikaere’s seventh (!) birthday was to take him bowling. It ended up being really really wonderful – the alley was black lit neon (meaning super high contrast, easy for him to see). The motion was simple (pushing the ball down a ramp – we had the gutters up for him) and repetitive, so he was able to anticipate what was expected of him, and there was a big crash when the ball hit the pins! So lots of great feedback and smiles, and general happy communication.
Mikaere had a great time, and he even won! We’ve had a few weeks of illness and tricky times, so I’m really glad that he’s pulled through and we were able to make some happy memories. As far as experiences go, this one was a winner!
#bowling#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit
Oh bub. One of the tricky things about birthdays is gifts (and the guilt I have about gift giving and birthdays and the frustration that I can’t really gift him what I want to, which is a life without NKH – anyway, it’s a wildly triggering time)
A lot of gifts just aren’t appropriate for our boy and finding things that work well for him (that aren’t a million pounds with the disability mark up) is tricky. We usually try find things our boy can easily play with, paired with an experience. The problem is we have most of the switch toys (and lasers, sensory kit, bells, singamals, foot baths, black light and neon visuals, buzzers etc etc etc). We have a gift list to make it easier for others wanting to purchase something for him, but we’re getting into the realm of we have everything, what else can we get for him? Because unlike other children, Mikaere isn’t going to age out of his development stage, into the next range of toys. He’s not going to become obsessed with the next whatever it is.
Still, sometimes it’s okay to fall back on an old favourite – the space blanket continues to be one of the best, it’s lightweight, bright and makes a great sound. Loads of smiles from Kai when we opened this! It was his first gift as a teeny babe, and it’s still such a winner. It cycles in and out of play, but there’s nothing like a brand new, fresh from the package space blanket.
#birthday#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit
In honour of Mikaere’s SEVENTH (!!) birthday tomorrow, we’re raising funds for NKH Research, in the hope that one day, other kids with Nonketotic Hyperglycinemia will also see their seventh birthdays and that one day, we won’t be counting birthdays and wondering if this will be the last one we celebrate with him.
Just, my Mama heart. If you told me, that Mama that stood in NICU, who couldn’t stop crying, waiting for her babe to pass that we would have SEVEN (!!!) years with our guy, she wouldn’t have believed you. She wouldn’t have believed that we could be SO LUCKY! Seven! Can you even imagine?
I say this with a certain amount of disbelief, because we were constantly told he wouldn’t survive, and have been conditioned to expect death imminently.
We’ve been witness to many, many NKH kids who have gained their angel wings, and we are, as always, waiting for the day it’s our turn to grieve. We know it’s coming, and we don’t take for granted any day we have with our boy.
Seven years – we’re so lucky. So so so lucky.
So please donate – in honour of Mikaere’s birthday, and to give hope that one day, we’ll be able to take all the days and years for granted, because NKH won’t even be a thing anymore!
Happy birthday sweet boy, we love you so much! x
Donate here:
https://www.facebook.com/donate/1011942056593715/703402091819100
#birthday#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising#SEVEN
