Hurrah for accessible play!! Honestly, I wasn’t sure if we were going to make it, but we did!Making as many memories as we can right now, and this was such a win 💛🥰🐝
We took Mikaere to the “Turn it Up” exhibition at the Science Museum. It had these accessible pipes that played music. It was the BEST.
#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh
When Mikaere was ill and was spending 20+ hours a day sleeping, I did a thing. It’s the thing I usually do when I feel helpless, in that I can’t heal my kid. I can’t take away his NKH, or stop the seizures or fix the brain damage, I can’t do anything to help his body weather the pain, or lethargy, or do anything to ease his experience. I can’t take away NKH for him.
But I can raise money for NKH Research. I can put out a new book, and have all the royalties (every single penny) go to NKH Research. I can do that, so I did. In a week of desperation to DO something. It’s not as slick as Charlie and doesn’t have the sensory aspects. It’s not as bright as Eva, but. BUT.
It’s actually pretty wonderful. Introducing Betty, what started as an experiment with AI image generation and has resulted in a book about a bee finding her way home. It’s cuter than I expected in real life, and actually, my 3 year old toddler really loves it.
Please buy a copy, all royalties go to NKH Research at UCL (the only organisation to have published research on NKH gene therapy!).
If you can’t afford to buy a copy, will you leave a review on the listing? It literally only has to be two words (make the title something like “great!” (Or super, brilliant, amazing; fantastic – use any adjective you like!) and then in the content pick another one word adjective). It takes two seconds, and the more reviews a book has, the more likely it is that others will buy it, and we’ll be able to raise more for NKH Research.
Currently it’s available in English, and in dual language formats Portuguese, Thai and Afrikaans. Turkish and other languages coming soon! (Want to see it in a different language, request it and I’ll prioritise it for you).
Betty the bee has lost her way; now available on Amazon: https://amzn.to/3SrHTod #linkInBio👆
#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising#charliethecrow#childrensBook#booksforWednesdays#teamMikaere#theMikaereFoundation#bettyTheBee
I’ve been really careful to not share all the downs and hardships over the last year or so. Mostly because I want Mikaere to have his dignity and his medical experiences should be private and not content, but I also want to talk about what it’s like for us, as his parents.
Mikaere had a hard time last week and ended up in an ambulance and in A&E. He very narrowly missed a stay on the ward (and only because of some fierce advocating on my part – the ward is not a very safe place for respiratory vulnerable kids) and it can be a scary moment when you’re trying to navigate a system to keep your boy as safe as you can.
Knowing that it’s likely I’m the one who knows the most about his disorder out of all the people in the hospital (NKH is very rare), and having to be medically competent, so I can ask all the pertinent questions (does this med get synthesised down a pathway that this metabolic drug also does? Do his bloods suggest toxicity of a this metabolic med? Will this plan interfere with all the other plans we have? Whats causing all these issues? Don’t say deterioration, because I’m not having a bar of it).
Because I know that if I make mistake, or if the medical team misses something, it’s a huge world of pain for our boy. It means that I feel I need to be hyper vigilant, and very into the details. It’s also taking on the power dynamic, because there was a lot of pressure to admit him. They said death was a “potential risk”, but then didn’t want to have the quality of death conversation and were shocked when I did (don’t try threaten death to a palliative parent unless you’re serious, cause wtaf).
He’s home now, and fine, and that’s wonderful, but he’s started a new medication which has meant extreme lethargy. Kiddos with NKH are already super lethargic, but while he’s titrating up, we’re seeing very little awake time.
I miss my boy, and his little cheeky vocalisations and funny grins. I advocated hard for this path, did loads of research to figure out what might work best considering his med schedule, looked at what other NKH parents had decided and how other NKH kids reacted but I wish it wasn’t so hard for Mikaere, or for us. NKH really sucks, hey.
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
