Tag

Year 4

Aug 30
0

Neverending Isolation

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This guy. So, I think we’re (touch wood) out of the last seizure war and into a place of relative calm (I say relative calm because he’s not seizure free, but it’s not the 20+ episodes with weird new presentations we were seeing before). We did lots to bring him out (mainly med adjustments for weight, and opened a new bottle of possibly oxidised oil), but as always its slow and takes time to kick in, and the recovery back to baseline is heartbreakingly slow. But there have been more smiles, and more awareness and more vocalisations (this kid has opinions!)

But. We’re still in this place. 25 weeks of isolation. Today is day 175. We’re still sleep deprived (getting up at 3am is not any easier 5 months later) and I still have all the anxiety about what’s safe for us.

Here’s what we know: the risk of Mikaere getting covid19 is worst case scenario (aaand we live the palliative care life, so worst case has a different, very real meaning for us). We know that covid is still rife outside our flat. Over 1k of people in the UK tested positive YESTERDAY. Last week over 9000 people died (400+ more than the week before).

Just, not fully knowing what needs to happen for us to be able to be safe outside is really doing my head in, because the honest truth is that it may never be safe. And if it’s never safe, then it becomes a balancing act between quality of life and the possible quality of death.

And the never leaving the apartment isn’t the kind of quality of life we want for Mikaere… but, the thought of taking the risk and going out, with the very real risk he might suffer unnecessarily/die is paralysing, you know?

I don’t know how to align those two things, and I’m all over the place about it. How do we provide the best possible life for Mikaere, considering the dangers? I’m struggling so hard, and I don’t have an answer.

I suspect this is even more difficult because in our little bubble we’re sleep deprived and without a wider perspective and without all our usual support (from our teams, therapists, groups, friends). It feels like we’re trying to make safety life/death decisions in the dark.

So. What would you do? Would you go out if the risk was death?

Aug 26
0

Trying to navigate blind

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I’m wary about posting this. When there are so many things out of your control, and those same things are basically what makes your heart beat, you become way more superstitious and faith going person than before.

So I’m wary about telling you that Mikaere’s seizures have lessened because the universe might hear and laugh and send more seizures our way.

His seizures haven’t stopped, but the frequency has definitely decreased.

Because the seizures were presenting differently, because they came on so suddenly, because they were relentless, it’s been a stressful few days.

Do we take him in to a&e to be reviewed? No, because all they’ll do is take bloods. They’ll swab for an infection he doesn’t have (because we’re still in isolation, day 164 today) and we won’t get the important plasma results back for two weeks, so going in is basically a risk (cause global pandemic, with little to no benefit). And at that point, it’s on *US* to figure it out.

So we do all the things. We weigh and adjust his meds based on any weight gain, and we video what the new seizures look like (is that movement really a focal seizure? Could it be dystonia? Could it be spastic movements or chorea?)

We go down a rabbit hole of research, reaching out to people we know in the community to understand what it typically looks like, how it’s treated, when it came on for other kids.

Spoiler: not dystonia or spastic movements or chorea.

We check the use by dates on all the meds, make sure the meds are what they say they are on the label, check they’ve been stored correctly and haven’t oxidised.

We try figure out what he might have come into contact with. Is he too hot? Too cold? Is he in pain? Are any of his muscles unbearably tight? Has he lost any range of movement in his limbs that might indicate pain? Are there any rashes or spots or anything that might give an indication?

Is this NKH progression? (I hate considering this, because it means there is nothing we can fix).

And so we sit. With our anxiety, asking Mikaere to please breathe while he’s having a seizure, cuddling him close after, reassuring ourselves that he’s still here, still with us.

We’ve already made the med changes, so we need to wait and see before we make any other changes.

But it’s hard to wait, and it’s hard to just watch and there’s definitely a toll on everyone (it’s hard not to feel like a failure, when you can’t help your kid when they’re suffering).

And slowly, the time between seizures stretched out and the frequency came down and the weird focal seizures went away and the tonics we’re used to seeing took precedence.

But it’s hard to trust this lull. It’s hard not to be on full alert, hard to trust that there might be less seizures today. That we might get awake time and maybe even a smile. It’s hard to relax into this deescalation and trust it will hold, while at the same time desperately wanting it to.

The special needs life, hey? Seizures can suck it.

Aug 24
0

Seizures are awful :(

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I’m holding the sedative meds, I’m ready. Waiting. Because I know it’s coming. I know that I’m going to have to sedate my child. Again. And that if I don’t, he’ll keep having seizures. Over and over and over again.

Around 4am there was a twitch. A slight lifting of the elbow and a tense shoulder. For a *moment*. I saw it, but before I could figure out if it was a seizure he’d relaxed. And then it happened again. And over the course of an hour it happened over and over, for longer and longer until they were recognisable as seizures. I need to wait for one more, as per the seizure care plan. Three in an hour, that’s the threshold. But I know it’s coming.

You’d think I’d be used to it now, but knocking your kid out isn’t an easy thing to do. Well, that’s a lie. It isn’t hard: position him so he won’t choke, pop the lid, squeeze half between his cheek and gum on one side, the half on the other side and rub his cheeks until he crashes out. Physically it’s one of the easier cares (way easier than nasal suctioning or button changing or fighting with the Lycra suit).

Emotionally? I feel like I’ve been pummelled. Emotionally I would like to never see my kid suffer seizures again. Emotionally I wonder if this is the beginning of the end (it’s not, universe. I didn’t put that out there so you could run with it).

Because it’s a never ending fight. Trying to figure out what’s causing them, trying to get them to manageable levels so he can experience some kind of quality of life, with awake time and development and (and in my head, I want to cry, because my sons quality of life comes down to him BEING AWAKE, and not, you know, every other joy a three year old might experience).

Honestly, the weight of this hand we’ve been dealt gets harder to carry. The never ending seizure war. NKH, you’re awful and I hate you.

Aug 17
0

Isolation and Backsliding

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We’re struggling. Without our giant team of therapists and nurses and all the many many people in our home who help us help Mikaere… we’re operating at a completely different level to pre-covid. The bar is much lower. Trying to get stretching and physio and therapy in…

Bluntly, it’s not happening, and I can see Mikaere’s development backslide as a result. It’s heartbreaking, and managing the guilt of we’re doing our best and knowing that our best isn’t good enough… because it can’t be. Two people can not replace the team we had. We’re trying to be everything and… we can’t. We can’t be night nurses and physios and SALTS and CCNs and OTs and vision therapists. That list doesn’t even include the fun groups, the social sensory time, or swimming or yoga or horse riding. Trying to find the mental capacity during the day to get in the basics of stretching and the physio and the equipment… it’s not happening.

We pulled out the walker today. The idea is not for him to walk, but to spend some time in a different, upright position, feeling weight through his legs and ankles. It’s been a while.

He spent a good five minutes of the fifteen he was in it not wanting to put his feet down. He’s miles away from where he was, and just… it’s hard.

Quality of life wise we’re doing our best, but how do we calculate risk/reward in this case? The risk of allowing people into our bubble? Most of the UK has normalised living with Covid. But when the risk for us is death? How do we normalise that? Is that risk, his death, worth allowing our team in to help support us support Mikaere? To give him a better quality of life? In NZ, our family is a vicarious no, because they’ve normalised life without Covid. In the UK, our friends shrug and ask what would need to happen for us to open our doors, and he’s terminal anyway, so shouldn’t we bet on quality over quantity?

I’m torn and I’m scared and I don’t have the right answers. I don’t know what the right answer is. How long can we keep living in isolation like this? It’s been months and months and months.

I can’t help but feel like there is no right answer, and either way we’re failing Mikaere. On the up side we found out it costs half a million pounds to hire a private plan to fly us to NZ. Where we could be safe. Anyone have a half mill handy they want to donate to our covid-safe migration? 🤣 I wish!

Aug 14
0

On early mornings

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Every morning with this one, when it’s quiet. The suns just coming up and London is quiet. No cars or helicopters or pedistrians. It’s cool (thank goodness), and quiet.

It’s in these early moments I wonder what kind of day we’re going to have. Will there be smiles today? Will he be awake and alert and want to play? Will there be Seizures? Vomits? Recovery naps that span hours and hours and hours?

I don’t know, yet. Right now he’s still sleeping, still cuddled in close and he’s peaceful.

Today is meant to be less hot (hopefully!), though we’ve been managing quite well with the heat (thanks for all the suggestions re: a cool mat. We were lucky, a very kind neighbour ran down to our local and picked one up. They’re magic, aren’t they?) but we’re all done being uncomfortable and sticky. We’ll see.

Another day in isolation (were Day 152 today). Onwards we go.

Aug 06
0

The correlation between heat and seizures.

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Another warm day, another day of seizures and struggle. He has both a portable ac unit and a fan pointed at him. He’s lying on the floor because it’s 1.4 degrees cooler than the couch, or a chair. I love the warmer weather, but not when it causes seizures. They’re happening every few hours. Just long enough for a recovery nap and some minor awake/aware time before another one hits. Blah.

Seizures are the thief of everything, and I hate them. They take away so much. At this point, what kind of quality of life is this? Seizing and recovering, not moving, no joy.

This is what NKH looks like. Seizures because it’s warm. The brain damage that’s happening in my little guys brain because of a tiny tiny mutation which fucks up a large chunk of his carbon folate metabolic system….

Living the super special needs life atm. We’re one of many, our story is standard, not exceptional. But that doesn’t make it any less heartbreaking 🙁

Aug 04
0

One of those days

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Today’s been a whole day. Of seizures and vomits and screaming and unhappiness and this face, this face that says so clearly he’s feeling sorry for himself? Yeah. That’s our today.

The shit thing is that this is our status quo. And I’m torn, I’m torn between pulling back the curtain and feeling vulnerable so you can see our reality, or resisting the pull to put some kind of positive slant on it or whether I should just delete this post because to be honest, today is a hard day. It’s one hard day of many hard days, because that’s just how life with NKH goes.

It’s hard for us to continuously share the hard things. It’s hard for us to then manage other people’s sadness at our hardship. It’s hard to navigate all the feels, because at the heart of it, no one wishes we weren’t living the NKH life more than we do (watching our son suffer and not being able do anything is our own special kind of living hell).

And I could, I could paint this with the positive brush. Of what we’re grateful for and focusing on the positives, but I don’t want to diminish this… this is our reality and I don’t want to positive-pretended make it palatable for others consumption.

So, honesty then. Today’s a hard today. And honestly, I’ve never hated NKH more.

#nonketotichyperglycinemia #specialneedslife #seizuressuck #nkhcansuckit #itiswhatitis #hardday #seriouslywherearethecustarddonoughts

Jul 27
0

On the The Online Charity Pub Quiz

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TLDR: Quiz was a raging success. We’re extending the quiz slightly for the next week for those who couldn’t make it – for a £5 donation, if you can correctly guess the movies and characters from the picture rounds, we’ll put you in the draw to win a surprise, silly, light hearted prize.  Photos under the post!

Donate here:  http://paypal.me/teamMikaere
Draw will be made on Friday 31st.
Rules: Open world wide. Add your answers in the note (please also untick the goods and services box, else the transaction fee will come from your donation).  Donations will be matched, so please dig deep!

Additional side notes: #5 – any of the movies he appears in is fine. It’s hard to know exactly which film this image is from!

———

WELL! I don’t even know where to start – the online pub quiz was a raging success!! Tony and Tess did a PHENOMENAL job of running our quiz. The rounds were hilarious, some questions were easy, others were more difficult (we’re rubbish at quizzes, so I was pleased to be able to answer some of them – though I found the music round to be particularly entertaining!)

There was an NKH round which, if I’m honest, I struggled with. I did a bit of a spiel and honestly, I hate doing the spiel. We do it because spreading the word about NKH and the realities of it is important, but oh. Telling people your kid has a terminal disorder, and is likely to die and lives a really grim reality is emotionally hard. I’ve been doing the spiel for over three years now, and each time I get teary. It’s important that people know, but oh. It’s so hard.

We’re grateful that people are kind, afterwards so many people sent a lot of lovely messages sending their love and support. It sounds really stupid, but making ourselves vulnerable, and opening ourselves up – even at just a quiz – it’s really really personal to us.

I had to take a mini break mid quiz after the spiel, it’s been a long time since I’ve had to say out loud, to an audience what life with NKH is like. Listing symptoms and average death ages and just – just how limited life with NKH is. We try so hard to put a positive spin on things, because how else do you live with the day to day of grim? But peeling all that back and being truly honest,  it cuts down all the defence mechanisms I’ve put in place to manage.

But, like I said, we have hope (and I hold so hard to that hope it’s ridiculous). In research, and a gene therapy cure and that one day our reality will be a thing of the past for families like ours, because life with NKH WON’T EXIST.  There will be an EFFECTIVE TREATMENT! (I’m getting shouty, because the idea that kids won’t need to suffer seizures and developmental delay and be severely disabled and die because of NKH is HUGE)

Which is why I do the spiel, even though it’s hard. Because the hope and the dream is worth it.

I’m grateful for Tony and Tess smoothing over my emotional moment with grace and kindness, acknowledging the hard and gently guiding the tone of the quiz back to fun and light while not taking away from the purpose. Honestly, they’re such pros.

And YOU GUYS! We raised £1880, which will be matched, thanks to Tony’s employer.

But we think we can raise a smidgen more (the NKH cure dream is strong, you guys). So we’re opening up the Picture Round for everyone who couldn’t make it on the night.

for a £5 donation, if you can correctly guess the movies and characters from the picture rounds, we’ll put you in the draw to win a surprise, silly, light hearted prize.

Donate here:  http://paypal.me/teamMikaere
Draw will be made on Friday 31st.
Rules: Open world wide. Add your answers in the note (please also untick the goods and services box, else the transaction fee will come from your donation).  Donations will be matched, so please dig deep!

Additional side notes: #5 – any of the movies he appears in is fine. It’s hard to know exactly which film this image is from!

Side note: if you’d like to donate and not play, thats okay too. If you’d like to donate more than £5, or less, we’re grateful for any contribution!

Please get involved, we’d love to hit the £2500 mark.

Again, thank you to everyone who came to the quiz. We had 37 teams from all over – in NZ, the US, the Netherlands, Scotland, England. It was mind blowing. To everyone who donated and sent messages and was so clearly on Team Mikaere. We love you guys. We couldn’t live this life without your support x

This slideshow requires JavaScript.

How to play:

  1. Make a donation to: http://paypal.me/teamMikaere
  2. In the notes name the movie and character!
  3. (Surprise, silly and light hearted) prize drawn 31 July
Jun 29
0

On a walker update

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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 🙂

Jun 24
0

Is it safe? Can we go outside yet?

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This photo is as much of the outside as we get right now, our little 1.5×3 balcony. As lockdown in the UK is easing significantly, I keep asking myself if it’s safe to rejoin the world yet. Is it safe is it safe is it safe?

Hairdressers are to open, as are cinemas and bingo halls and theme parks. Pubs and restaurants are opening indoor service. The UK gov has even given the go ahead for people isolating, like us, to return to normality (with social distancing) from August.

But what is social distancing? Apparently it’s two metres, except when you can’t do two metres, so one metre. Except no one is going to bother with that, are they? In shops or on footpaths or in any situation where it’s inconvenient.

The thing is, the government is all for opening everything up, but an open letter published in the British Medical Journal has said “available evidence indicates that local flare-ups are increasingly likely and a second wave a real risk”. It calls for a review, which among other things, should identify current weaknesses where “action is needed urgently to prevent further loss of life”.

It was signed by the presidents of the Royal Colleges of Surgeons, Nursing, Physicians, and GPs. The bodies of people who inform the government.

The other thing that gets up my grill, is that yesterday the prime minister, good old Boris, said he did not believe there was “a risk of a second peak of infections that might overwhelm the NHS”… can we take a moment to point out that his concern was for the NHS, and not for the many many lives that would be lost with a second peak?

Yesterday the number of additional deaths due to covid in the UK was 171. The number of additional confirmed cases was 874.

Hundreds of people are still dying everyday from covid. Hundreds more have a positive test result. And sure, it’s not the thousands that we saw in peak, but does that make it safe, for us?

Can we go out, for walk, to the supermarket, to appointments, and feel safe? Can Sam go back to work? Can I got meet friends for coffee? Is it safe is it safe is it safe?

How do we know that our baby boy isn’t going to be snatched away by a respiratory virus? How do we know we aren’t coming into contact with people who are asymptotic?

The tricky thing is, we obviously want to go outside. We want to be able to shop, and go for walks and see our therapists. We want to be able to sit in the park, and go visit Sams family and be able to go down the road and get a coffee. Made by a barista with the fancy machine, with milk FOAM and a take away croissant, and eat it at a table while watching all the people! (It’s been a very long time since we’ve been out and about).

Is it safe, is it safe, is it safe?

See, I don’t think it is. I don’t think the virus has been eliminated, I don’t think the numbers are down enough to make going out a negligible risk, and I don’t trust the government to make decisions that are best for us. In fact, in 95% sure the government is setting out policy that that puts the economy and ‘feel good news’ ahead of evidence and consultation with scientific bodies (in addition to being very clear: loss of life of the vulnerable is not high in their list of priorities).

I’ve read so many interviews with academics that all caution risk (example, Prof Stephen Griffin, who is a virologist at the University of Leeds was very clear, “we have not eliminated this virus or suppressed it to what I would say is a safe level.” The people who study viruses are very very clear, saying it’s not safe.

It’s not safe.

That in general, there are still so many local community level transmissions, most of which are unknown and not tracked because the system is not especially efficient (sure, they can know you had coffee with your sister day before yesterday, but can they track everyone that was on the bus you used to get there? And everyone those people have been in contact with?).

It’s not safe it’s not safe it’s not safe.

It’s not safe.

And I hate that. Because EVERYONE ELSE is out meeting their friends and family and being outside and enjoying the summer. Everyone else is making hair appointments and picking up BBQ makings and enjoying pitchers of Pimms, and walks in the parks and ice cream from ice cream trucks. They can browse supermarket aisles at their leisure and go shopping. They can be outside and go for walks.

And it would be so so so easy to join them. To trust the government and put Mikaere in his buggy and go for a WALK. OUTSIDE!! (The ecstasy of that statement requires the overuse of capitalisation).

But it’s not safe.

The other thing is that I don’t know for certain what “safe” is. Is elimination a realistic goal in the UK? The lack of community transitions? Significantly reduced transmission numbers? Is it when the scientific bodies say it’s safe?

I just want to be able to go outside and live our lives without the fear that our son will catch a virus that will kill him.

It also desperately makes me wish that we’d somehow magically managed to move to NZ, so we could be there. In a country where they’ve eliminated covid within the community, and the leadership are being decimated over the few cases they have (they have 32 positive cases. So few in fact, that their daily stats briefing shows you where they are, their age, sex and what flight they arrived on).

But we’re not there, we’re here. (It could be worse, I guess we could be in the USA, whose death rate surpasses every other country and is in the millions, whose peak is rising and yet is still opening everything back up because the economy > people’s lives).

But also, if we’re making wishes, I’d wish our baby boy didn’t have NKH. That NKH wasn’t even a thing that existed, and no one, ever, had to suffer under it’s influence. I’m fully aware that there’s about as much chance of that happening as there is me taking Kaikai for a meandering walk outside today.

Hey ho, onwards (in isolation!) we go.