All Posts By

Ellly

May 31
0

On visiting the A&E

By | #teammikaere | No Comments
It’s not the first time we’ve had to call an ambulance this year. It doesn’t get easier. The counting of the seizures, timing them, logging the presentation. After we give the second buccal, we’re meant to call an ambulance, but I don’t want to. Not really. I don’t fancy spending hours in a&e, holding down my boy for bloods. (That’s not why, though. The why is that I don’t want this to be beginning of the end, I don’t want this to be a deterioration, but I don’t let myself think those things. Instead I think about the uncomfortable chair and the boredom and the endless waiting and the child with the disorder so rare people just ‘pop in’ to introduce themselves and say hi).
So instead I call our critical care nurse, and let her convince me. She clears the way. When they arrive, the ambulance service already has Mikaere’s directive. We’re ready and waiting, and so we head right out.
Thanks to our nurse, the paeds A&E knows to expect us, which means we go right into Majors (it’s busy. The other two bays are already full with a broken ankle and a concussion. Usually they’re empty).
Triage is quick. Seizure frequency is up and drastically different from his baseline. We’ve given emergency meds twice and the seizures are still breaking through. We’re here for a review, and to rule out any acute indications that would mean a symptom stay.
The physical review is clear. No red flags. The bloods come back clear. Infection markers are low (so no infection). Everything looks fine.
At this point we’ve been in the a&e almost seven hours. The last four have been seizure free, and as there are no acute concerns, they’ll send a message to his neurodisability consultant to follow up, and they wave us out.
Grateful to be home. Hate seizures. Hate that this is happening with more regular frequency.
Hey ho. Life with NKH, hey?
  
May 26
0

On a bit of elastic

By | #teammikaere | No Comments
Mikaere’s at risk of hip subluxation or hip dysplasia. Subluxation is where the thigh bone is partially dislocated or fully dislocated from the hip socket, and hip dysplasia is when a hip socket that doesn’t fully cover the ball portion of the upper thighbone (which in turn allows subluxation).
The reason for this is quite simple: because Mikaere can’t weight bear independently, he’s not spending nearly enough time on his feet to allow his hip sockets to form like they should. Let’s be honest, he spends most his day lying down, or in supportive seating. Now that he’s so big, standing is typically a two person job, and as he grew out of his standing frame last year and our trial appointment for the next one isn’t till July… basically, there isn’t a lot of standing going on.
When lying on his back, Mikaere has a tendency to splay his legs wide. It’s called excessive hip abduction, it’s no big deal, except that because he has low tone and it causes his hip to rotate slightly, it can hasten the journey to subluxation.
So, on the advice of our physio we introduced a bit of elastic band to our set up. Don’t get me wrong, there are lots of fancy, therapy-esque things you can get (like hip helpers, or the happy strap, both which we’ve tried and he’s outgrown) but they are all VERY expensive. We had elastic at home, and tied it together in a loop (very technical, and free) which works in the same way.
Essentially, it stops the excessive hip abduction, gives his muscles a teeny bit of a stretch in a different position and it was affordable and accessible. Woo!
I wish all disability equipment was as affordable and accessible as bit of elastic, but hey ho. I’m glad we’ve made it work in this case 🙂
  
May 25
0

On celebrating the wins

By | #teammikaere | One Comment
This guy. Despite a whole year of no therapy bar us, not seeing any professional therapists and despite some minor backsliding in regards to his truncal tone, he’s doing SO WELL! We recently reintroduced weekly physio sessions with a new physio (our previous and much loved physio @lauragates82 moved away!) and Mikaere has risen to the challenge. Just LOOK AT THIS HEAD HOLDING!
I remember sitting in a room, once, learning about laser therapy and practically crying as I disclosed my fear that my baby would never hold up his own head. I worried that without head holding his ability to interact with the world would be limited (my well meaning but very ableist fears were ripe back then, and I’d soon learn how to adapt so he could engage with the world, head holding or no).
Regardless of my hopes and fears for him, I want to share just how hard he’s worked to develop his head holding skills. It is not all the time, but YOU GUYS! Just look! Is he not just the *most beautiful*? (Obvs, his pretty face is not related to his head holding ability, though I’m chuffed for him for that, too).
My mama heart, I love him so much!
May 19
0

On visits during covid times

By | #teammikaere | No Comments

After getting vaccinated, isolating, and having negative covid tests, Mikaeres grandparents came down for a visit. Mikaere loves his grandparents, when they walked through the door he got very vocal, and there were smiles.

He loved the cuddles, and oh! The IN PERSON stories instead of on the iPad! So good. It’s been sixteen months since we’ve seen them last, and we’re grateful that they were able to come and see us all.

The things we’ve missed, hey?

 

May 14
0

On staying in, still

By | #teammikaere | No Comments
Things are opening up here in the UK, and as always, I’m anxious. The world doesn’t feel safe for Mikaere. I want to trust in the vaccine (please get vaccinated if you can!) and hope that it does drastically slow transmission… but from the (ridiculous amount of) research I’ve read, it looks like the vaccine only reduces the risk of transmission (by between 25%-35%) but doesn’t STOP transmission. What it does is prevent you, a vaccinated person from experiencing severe symptoms.
Which is great, genuinely. Except that Kai wont be vaccinated (his first set of vaccinations put him on end of life care. We were living in intensive care/hospice for MONTHS). So, if the vaccine doesn’t stop transmission, Kai’s still at risk.
With the world opening back up and the CDC gettin frivolous with mask advice… the world just seems like a less safe place. I don’t know. I’m hopeful with reduced transmission rates thanks to increased vaccinated (ignoring the Indian variant) and with summer coming… perhaps it will be okay?
Perhaps in a few months positive cases would have dropped off (rather than the increase we had last week) and perhaps it’ll mutate itself into a less scary version and just… go away.  Obviously, we’re as keen as anyone to get back to normality, but the risk for our little family is so much higher than everyone else. It’s really hard, hey.
So, we’re doing what we can. Sensory foam play, with ducks. That brought a good 15 minutes of joy, I’ll take that.
Apr 21
0

Messy Play: Beans + Lentils

By | #teammikaere | No Comments

We needed a small win today, something easy and interactive and joyous, but easily implemented because #lockdownLife is still a thing. So messy play it was! Beans and lentils, things that feel lumpy under little fingers, on a tray that makes a good sound when you bang it, and beans that bounce and make a good noise when they’re flung to the floor. It’s the kind of thing Mikaere enjoys – it takes a little bit of effort for him, moving his arms, especially when he can’t necessarily *see* the things he’s flinging, but, I mean…. they went everywhere. He was so joyous about it, too. The sound they made hitting the floor. Satisfying, for him.

Also, I’ll deny him nothing – if a moment of happiness for him is making a massive mess? No big deal sweeping up beans, it’s fine.  Sure, it was a good half hour of sweeping and banging and laughing, so worth the tidying after. It’s the small things, hey?

Apr 17
0

This Faaace

By | #teammikaere | No Comments

This is the face Mikaere makes when he realises he’s spending the day with his nurse, and not with Mama. I think that face says so much, because it’s clear: with her he can do more, there is more fun and there is more attention (which is fine, because, that’s the point of a 1-1, right?)

We have a really generous package which allows for a significant amount of day/night help. Which we’re grateful for, absolutely. But also… there is that little kernel of guilt and sadness that, unlike a neurotypical family, we aren’t enough. As his parents we can not provide the round the clock care he needs (and we know, because we tried in that first lockdown, and it was awful for everyone). We literally don’t have it in us to be everything he needs, and when we try, it literally comes down to “how do we get through the next five minutes” (or ten minutes, hour, day…) and all the fun, all the engagement, all the therapy is lost, and his skills backslid. Also, knowing he’s palliative, and his life is limited, the quality of his life is really really important to us. And there was a significant drop because, bluntly, we didn’t have the capacity, and were running in the at minimum “keep him safe’ mode.

With the support of our nurses, fun for Mikaere has returned. Play, and therapy and just, intense the 1-1 attention that he needs to engage with the world (and needs, to keep him safe) – all of that is possible in a way it wasn’t before.

We’re also grateful that because of the sacrifices our nurses have made, isolating like us, in the extreme, we’ve been able to have them join our bubble. Without their willingness to separate from their friends and family (and walks and shops and everything else) we wouldn’t be able to accept their support. We’re so so grateful for our team.

So yes. That face. Worth it, hey?

Apr 07
0

On Standing

By | #teammikaere | No Comments

Mikaere has outgrown his stander. We have a walker, but it’s difficult to get him to weight bear in it, and still keep his body in alignment. It’s much easier to practice freestanding with gaiters (to keep his knees locked) and AFOs (to stop his weak-never-has-to-weight-bear ankles from collapsing). The downside is that it requires two people to support him upright in this way, so when Sam has a gap at work and Mikaere’s in a good place, we do a moment of therapy. We dance to some tunes, and wiggle our hips and raise our arms and move our bodies.

It’s not the hour in the stander the physio wants, but it’s fifteen minutes or so of actual standing, transferring weight and proper uprightness. I’ll take it. We do what we can.

Apr 02
0

On Lockdown Balcony Life

By | #teammikaere | No Comments

Lockdown Life is never ending. It’s been OVER a year, and while people keep telling us “I don’t know how you manage” – me neither. I don’t know how we’re doing this, really. I’m living it, and it feels impossible, and yet… here we are. There’s no choice in it, so onwards we go. I’m trying to find the silver lining, and todays was… I mean, if we’re relegated to the balcony, it’s nice that we have chairs now.

Officially, clinically extremely vulnerable people are able to come out of shielding in the UK, but knowing the government doesn’t prioritise disabled people, that we live in an incredibly ableist system, it’s not easy to trust that advice or guidance. Particularly when the letter basically said you no longer need to shield, but we suggest you engage in behaviours that look an awful lot like shielding, but it’s just guidance and all the support that helps you do that is removed. Okay then.

So we do what we always do, which is to read more and try inform ourselves best we can, weigh up our options, figure out how comfortable we are with different levels of risk… At this point we’re still sitting with it, because it’s hard… figuring out a plan and comfort levels, how do you define what is acceptable risk when the consequences are so dire? How do you balance quality of life and risk? How do we ask those questions of ourselves?

It’s a tricky one, there’s no right answer and to be honest, this has been an ongoing conversation all year and we’re tired. So, we sit with our questions, and we hang out on the balcony.

Still, he looks pretty cool, hey?

Sep 12
0

On lunch in a park

By | #teammikaere | No Comments

After the hospital appointment last week, we stopped in at Regents Park to eat our (home packed) lunch. There isn’t a safe place to eat near the hospital, no place to be socially distant and not worry about someone walking too close without a mask.

Regents Park is huge, and was on the way home so off we went.

It was nice to be outside, to be somewhere different. But to be honest, I was so highly strung. Anytime I caught sight of a person in my peripheral vision my entire body would go into high alert.

No one was wearing a mask (apparently people don’t feel the need to outside) and people weren’t really social distancing (and if they felt they had to pass you on a footpath, they would. Instead of waiting further back or crossing the road or any of those other things that require a bit more thought or effort).

So yeah, we sat outside and it was nice but I was too highly strung and anxious about strangers to really enjoy it.

But Mikaere, oh my days the joy. He enjoyed being out, he had his feet in the grass and the wind in his hair and ginormous grins with little happy chirps.

He was happy to be out, for sure, so I’m glad we took the opportunity when we did.

Because when I looked at the gov stats this morning, I saw this giant spike of positive cases. You can try minimise it all you want (and I’ve seen people try, using smaller numbers, or reducing to x per million, or it’s not in my area or trying to say it’s because testing capability has improved) but the long and short of it is that no matter which way you cut it, THOUSANDS of people in the UK are testing positive everyday. THOUSANDS of people have covid and are contagious.

We only need one person, just one, to be near us and we’re down the rabbit hole of doom.

Looking at that spike makes me feel ill. The risk for us is real. Like we were risky to go out, and sit in a park.

And the hard thing is no one else seems worried. Schools went back this week. Pubs are still open. Friends of mine are openly travelling (!) like it’s no big thing. And I get it, people are fatigued. But if the cost was death to someone you loved, would you go to a pub? Would you go get your hair cut? Would you get on a plane?

Please stay home. Please wear a mask. Please wash your hands with soap more than you think you should. The safety of our family relies on others like you doing your part.