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 🙂
