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On making hospital appointments efficient as possible

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Hospital visits are stressful. Today we had an appointment with our epilepsy paediatrician that ended up being a two and a half hour visit. Not with the paediatrician (in fact, our appointment had been rescheduled without us knowing, so we were squeezed in between patients. We carved out half an hour of someone else’s appointment. We should have hand an hour with her – I’m frustrated!).

Needless to say, I went in armed with a list. I had the cheat sheet ready (mainly with a printed a4 sheet with a list of medications and dosages so we don’t need to waste time writing them out) and a list of things I wanted to cover.  We talked fast. About Mikaere’s seizures and med changes and vomits and dropping a weight percentile, about referrals to respiratory, Gastro and a developmental dentist. He had a rash on his face, and needs bloods for his metabolic consultant and a hip X-ray for his physio and a strength/needs assessment for his educational psychologist. She measured his head and listened to his chest and felt his liver.

We got a lot done, and as I wheeled Mikaere out (with the rain cover on to keep him from coughs and colds and germs of everyone else in the hospital) I had a new list of things to chase and follow up.

First a nappy change and a flush, and then to the paediatric bloods room. I liked this hematologist, his name was Rafal. He was experienced and didn’t have to prick Mikaere several times. He used a butterfly needle to collect blood in an adult tube (the red one; with no added mixes) and decanted into the smaller bottles. I like that, it meant it was quick, and less damage was done to my boys arm. Mikaere was a trooper, no tears, no drama. He even had a smile for Rafal. I appreciate that there was no screaming, and Rafal did everything he could to reduce the pain and reduce risk.

We paused in a side corridor so I could give meds and put then feed on, then to visit the CCN (community care nurse) to pick up some giving sets (that’s another fight we’re fighting, as nutricia have changed their giving sets again and the new alternative doesn’t work for us) and some catheters and to get a form signed.

And then onwards to X-ray, to look at Mikaere’s hips for hip subluxation. Mikaere was well behaved, and tolerated it like a pro. I laughed when he peed all over the table (I’d warned the radiologist he would). And then another flush, and home again to meet our hospice nurses.

But this is what it is for us now, I work hard to ensure our visits are super super efficient. That bloods and xrays work alongside other appointments (ideally on an off day so we’re not waiting alongside other clinics). It also means we’re not there all the time, keeping our hospital visits to a minimum is always a priority for us. Reducing risk of catching something from someone else.

It’s hard, and I power through the day. But this is what our day to day looks like. This is our ordinary at the minute. I hate it, hate it hate it hate it. But it’s what we do to keep our boy safe. So hey ho. Onwards we go .

To my son I’m a giant blob

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I found out something huge today. We met with our ophthalmologist. A lovely man. Who whistles and sings to Mikaere and works hard to illicit a smile. He’s lovely, and makes the effort to be sure I know what’s happening and am at ease. I wish all doctors were like him.

We know Mikaere’s vision is not 100%. We know he can’t see everything and relies heavily on his other senses to understand what’s going on around him. He explained Mikaere can’t see. He can’t SEE. He doesn’t occupy the same visual space as I do, because he can’t SEE like I do.

This, more than anything, has knocked me for six. My baby can’t see like I can. To clarify: he’s not blind. He can see some things. The example was it was like looking through a piece of Swiss cheese that keeps moving. Or listening to a foreign language where you know four or five words, you can grasp some meaning when you hear a word you know, but it’s gone so quickly and you’re back to incomprehension.

Another, more visual example was this. We see this:

A person with CVI might see this:

Our ophthalmologist officially registered Mikaere as sight impaired. Essentially, there is nothing wrong with his eyes, his brain isn’t processing the vision signals like we would. And that’s everything.

Just… of all the things we’ve been focusing on, vision was not high up the list and it should have been. I’m only just now realising what this means for him.

It means everything is moving too fast, everything is happening too fast for his brain to catch up. It’s why he looks away before he reaches for a toy. It’s why he startles so easy, because he uses his hearing to compensate and he can’t anticipate actions that make noise (in addition to his moro reflex being crazy).

I’m not sure how to help this, how to compensate, how to give him a way to navigate his world.

I just… my son can’t see like we can. He doesn’t exist in the same visual world that I do. I’m heartbroken for him. He lives in a completely isolated world, where not much makes sense. Honestly, NKH is rubbish. Absolute rubbish.

Drinking shouldn’t be a Coping and Resilience Strategy

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Following up on that last post, I want to talk about how I went to a ‘Coping and Resilience Strategies’ talk at our special needs playgroup centre a while back (way way back). You’d think it would have been well timed, right?

There was an educational psychologist who had a special needs son who had come to talk to parents like us. She was ten years ahead in her special needs journey and felt she was able to come chat to us. Perhaps it was that I was the only parent there with a terminal diagnosis, and one of the few who was regularly receiving announcements of other children we knew who had died, but her talk didn’t resonate with me.

First, she talked about coping. I think there is a huge difference between coping (which we all do out of necessity to keep our children safe and alive) and coping well.

I’m not coping well. And you can tell. I’m snappy, unfocused, and go from fine to deep deep in the abyss. In the meantime I have to hustle to get myself moving, but that hustle has zero results, I’m hustling but I’m a mess. I’m easily distracted and really have to force myself with lists and checks to make sure Mikaere’s needs are met (I’m not talking about his basic needs, I can do feeds, nappy changes and meds and appointments with my eyes closed. I’m talking about chasing up that gastro and respiratory referral that went nowhere, calling back the wheelchair lady who called to book an assessment and his anti-epileptic dose needs increasing and I should reach out to the neurologist and I need to chase the nerve/skin biopsy sample to make sure the fibroblasts get to the researcher, and I need the community nurse to update the gp with his latest doses cause the pharmacy got a prescription with the wrong ones last week. The OT needs chasing, because he’s due another block, and his chair needs a new pommel/groin strap that makes his current chair unsafe. Can I fit in more CME or ABM? I need to chase the therapist…) That stuff, the never ending special needs loose ends that would fly off into the wind if I’m not careful).

But it’s work. It’s work that requires attention to detail and focus and time and I have none of those things. At first I was all make it achievable. Do five things. Just five. But then Kai had a seizure or an unexpected therapist showed up on the wrong day or the carer was sick and couldn’t come and my day was derailed. My days are always derailed.

So come 3pm and I haven’t eaten and am only half dressed (despite the three therapy appointments we’ve already had) and I need to hustle to get Kai down for a nap and still do his blend before 6pm and just… I’m struggling. I’m struggling. It’s all hands on deck, what do I need to do to get through.

Anyway, back to that talk. She didn’t give us strategies for coping. She asked US to provide strategies. Shut up. I have no strategies, which is why I came to the damn talk. I want to know what it is I can do that fits in Kai’s day that’s affordable that I can do.

There weren’t many. Exercise and therapy and socialising (aka, drinking. Not even kidding). But they’re all things that get cancelled on a derailed day, and our days are often derailed. The main thing on the list that I could do was drink. I’m not even kidding. But I can’t use alcohol as a coping strategy because I need to be sober for Kai.

After the not very helpful talk I went to the local pub with a handful of other social needs parents. I drank gin and bitched about the inefficiency of the NHS central booking/appointment system, and nodded as other parents bitched about EHCP’s and having to fill out the DLA forms and fighting with their dieticians about the blended diet. It was beautiful. But that was one night, when my boy was safe at home with Sam and a nurse. That’s not a regular thing, and so sue me if I don’t want drinking to become my main coping mechanism.

My point is we live the special needs life. It’s hard. So hard. But we move forward out of necessity, because these are our kids lives. We cope out of necessity. We show up. But that doesn’t mean we’re coping well.

Coping well, that’s what I want to know how to do.

It occurs to me, that as I reach well over two years of living the special needs life, as he gets older and requires more support, and the support we get is less, I now understand why special needs parents ahead of us have the attitudes they do. They’ve been in the wars longer, they’re less green, and they don’t have answers either.

I don’t have any answers. Hey ho. Onwards we go.

On Seizure Monitors

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Gadgets. We have them coming out our ears. One problem we have is knowing when Mikaere is having a seizure when he’s sleeping. His seizures are silent and horrid and we need to know when he’s having one so we can give relief medication if he needs. At the minute we have night nurses a few nights a week, which is helpful. They stay awake and watch Mikaere. When we don’t have night nurses, Sam and I sleep in shifts. But the problem is in the wee hours. Sam’s shift usually goes until around 2am, and typically I’m up for the day around 5, 5:30am. In those inbetween hours, it’s usually whoever is around, or whoever is the most awake.

Except, you guys, we’re SO sleep deprived. We’re special needs parents, so of course we are. But when you’re sleep deprived, we run the risk of missing something in those inbetween hours. It scares me no end. So, gadgets. We have all the gadgets.

We have an angel care mat, and while that’s a relief, it only alarms when Kai stops moving for more than twenty seconds (which is to say if he stopped breathing and was completely still for twenty seconds). But with seizures he jerks.

We tried wearables next. Specifically the neebo, as his feet are now too big for the owlet. Except the neebo wasn’t accurate enough for us. Additionally the strap left red marks on his arm.

Then we tried the RayBaby, a gift from a friend. Ray baby is a baby monitor that tracks breathing. As Kai breath holds and then hyperventilates when he’s having a seizure, we’d hoped that RayBaby could help. Except that RayBaby couldn’t distinguish between an empty crib and one with a baby in it. It’s still very very beta. Womp womp womp.

Our saving grace is the pulse oximeter my Mum got Mikaere. It’s an old Massimo Rav 5 that a client gifted as they were upgrading their kit. It has a probe that goes on Mikaere’s toe and measures his heart rate and o2 saturation levels. When he has a seizure his heart rate sky rockets and his o2 drops – we have alarms set to go off when they hit certain thresholds.

He wears it every evening when sleeping, which means we don’t need to be as hyper-vigilant as we used to, game changing when everyone is exhausted.

The only downside is he can’t wear it all day. It’s too big, and the minute he’s awake he’ll kick and wriggle and the probe comes off. Still, it’s good when he’s sleeping, which is when he’s most likely to have a seizure.

We’re also on the waiting list for a seizure movement monitor from Muir Maxwell, and Epilepsy Trust in the UK, but I’m not convinced it’ll be any better than the pulse-ox to be honest. I don’t know you guys. Seizures are awful. They’re really really awful and I’m terrified I’ll miss one and that will be it. SUDEP (Sudden Unexpected Death in Epilepsy – it’s when a person with epilepsy dies without warning and where there is no other obvious cause of death) has me incredibly fearful of falling asleep and missing something. I guess it’s a special needs parents thing, where you go to sleep but you’re not 100% sure your baby will still be alive when you wake up. The Fear, I have it.

Epilepsy parents, what do you use to monitor your child?

On the Upsee

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Have you heard of an upsee? It’s a harness that allows kids with special needs to walk. You strap a harness to yourself and attach your beautiful special needs baby to the harness, and together you walk.

You guys – kids who have never had the chance to walk are WALKING!

You can bet we got one for Mikaere (thanks to a grant from the amazing Eilfar Foundation) and we were pretty keen to try it out.

Well, it turns out my legs are too short, or Mikaere is too tall so it doesn’t work well when it’s the two us, but with Sam or Andy (Mikaere’s grandad) it’s magic.  For a small while, our boy walked. He rocked on his toes and did the hockey pokey and he was upright and WALKING.

I can’t being to explain how huge this was for us, my emotions just went all over the place and I wanted to cry. He NEVER gets the opportunity to do this, to walk around the kitchen, walk about the garden with his grandad. He’s always strapped in, and wheeled around. Never ever has he been in the position where he can walk, even if it is assisted.

I didn’t know this, but my boy is tall, so tall. And he’s got the skinniest little legs and the sweetest knobbly knees! The best bit is when you’re wearing him, you can feel him *want* to walk. You can feel him lift his feet in anticipation and move himself forward. It’s beautiful. So so beautiful.

I’m aware that this amazing bit of technology only works for us because Mikaere’s head holding has improved dramatically. If he can hold his head up, that opens up all sorts of interesting opportunities for him.

It’s amazing hey? We’re pretty pleased.

On the support from Infinis

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We have a village around us, for sure. I’ve spoken already about how Kai’s Grandad Andy has rallied support through his work at Infinis. Mick, his colleague, ran everyday for a month last year for Team Mikaere.

To say thank you to Infinis for choosing Joseph’s Goal and Team Mikaere as their charity of the year we went up to visit. Quite a long time ago, (it was in October!).  They’re just wrapping their year now, and I wanted to say thank you, because this company went over and above.

When you walk into reception there is a giant poster of Mikaere and Andy. It’s right there, as you walk in the door. That’s how much they’ve got behind us.

When we visited we met lots of wonderful people, and I delivered a bit of a spiel (I was very emotional, and I cried. Telling groups of people about Mikaere’s history and his diagnosis never gets easier) – I moved it on, because I don’t enjoy crying in front groups of strangers, and we did a fun Q&A session. Mostly I asked them questions, how many people had raised safety concerns? (The company makes a donation for every time someone raises one). I asked how many people shop on Amazon, and asked them to use Amazon smile with Joseph’s Goal as their charity. I asked how many people had kids, and asked if they’d buy and Eva book.

And then they asked me questions. About the research. About his medication. About how the genetics work.

It was a lovely visit. It was lovely to meet people who were raising funds for us, who were helpful us find a future for our boy.

We’re grateful for every person who is on our team, and Infinis is clearly in our corner. Thanks Infinis, you guys are the best.

On raising £120,000

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Every month we get an update from Joseph’s Goal, who sends a super in-depth spreadsheet on how much, we as a team, have raised in the last month.

At the beginning of May we ticked over £120,000 pounds. I just – YOU GUYS! That’s a phenomenal amount – and that’s all of you. That’s everyone who has ever come to one of our events, who has ever run a marathon wearing a Team Mikaere shirt, who helped walk the Thames Barrier or bought an Eva book. That’s every Inifinis employee who has ever raised a safety issue. That’s every BV employee who has run around VondelPark or up Snowdon or did Tough Mudder, or just donated to those who did. For those who ran marathons or half marathons or 10K or 5k or just, didn’t run at all. For Penny + Tony who run a BBQ for Kai every year, for the Toddington Methodist who picked Joseph’s Goal as their charity of the year two years running. For those who have organised a pub quiz, or a wine tasting, or had a bake off. For those who had a charity poker game.

Thank you. When Mikaere was born that number seemed impossible, and now we’ve raised over and above.

Thank you for being on our team. We love you guys, our gratitude for all that you do to help give us a future with our son is overwhelming. Every donation is personal to us. Every message, run, video – that’s personal to us. Every single pound – we’re grateful. Unbelievably so.

For every person who has ever made the effort, who has ever given what they could spare, who has ever fundraised – we are beyond grateful. You’re helping fund a cure for our boy. It’s personal for us. Every single donation is personal to us. Every single person who has gone out of their way to help us raise money, that’s personal to us.

So thank you. We love you more than you know, and we’re overwhelmingly, genuinely grateful.

PS – Right now, Katy is running 30 Park Runs this year, and is asking for a £1 donation per run. Margot just ran the Milton Keynes Marathon for NKH, and a team of BVers (led by Sam!) just completed their Tough Mudder experience. Please donate – please support these people who are supporting us.

If you’d prefer – please buy an Eva book (seriously, they’re only £4.95, and all the royalties go towards NKH Research). Or share one of the eva books. Please set your Amazon Smile Charity to Joseph’s Goal.

Every single donation makes a huge difference to NKH research, and has a huge huge impact on Mikaere’s quality of life and the hope we have.

For every person who has ever asked what they can do to help – this is it. Please run a fundraiser. Please donate. Please help us raise the money so we can find an effective treatment for NKH, and for Kaikai.

Please donate. We love you.

The Just In Case Kit

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We have a lot of kit for Mikaere.  Things that he might need. Our paedatrician once called our flat a mini hospital ward. When you walk into the spare room there are oxygen tanks. And there are nasal cannulas and a suction machine with a kajillion catheters. There is the stat monitor we cart around in the buggy, just in case. We have pumps and giving sets for the days that Kai’s too poorly to manage bolus feeds. We have a tool box under our bed. It’s filled with emergency just in case meds and IV equipment.

There are three giant plastic boxes in our living room. One is filled with just in case meds. Powdered antibiotics. Seizure meds. Movicol for constipated days and gaviscon for refluxy days. There is one for all the extra stuff. There is numbing cream just in case we need to do bloods, sterile kits, aprons and creams and spare ngs and all the rest of it. The third is a giant box full of enteral syringes, just in case we run out.

We have at least three boxes of medical latex gloves, just in case you’re doing something that requires gloves. 

When we first got all the kit, the just in case everything was overwhelming. So much stuff. Now? Now this is our new normal. I can pack up the buggy in 10 minutes (thanks to being extra organised and having a kit ready to go), printing off an updated cheatsheet for the new whoever from whatever appointment, and gathered all the extra whatever we need for the day from our stash.

It works well enough. Mostly. However, it doesn’t work so well when I’m somewhere that requires me to park the buggy. It means I can’t leave controlled substances (aka seizure medication) in the buggy, and I can’t leave a tank of o2 just hanging about. Or quite expensive stat monitors. All of those things no.

An outing without the buggy to carry our gear requires some planning. An overnight stay requires spreadsheet-level organisation, and when we arrive at our destination, we descend with our equipment and take over the space.

Still, I find it comforting to have all the things, just in case. Sometimes it can mean the difference between being in hospital and not being in hospital, being able to manage at home or while we’re out and about. Worth it, hey? If I’m able to keep my boy out of the A&E, it’s worth it a million times over.


The reason I write this post is because I overheard a new father exclaim over the amount of gear they had for their (neurotypical) newborn. A wanted to share our perspective with him, but couldn’t, because I’m a stranger and was eavesdropping. It’s always about perspective, hey? Because from my perspective, all his stuff can fit in one bag. Food, entertainment, nappies + a change of clothes. I could fit that in my *handbag* and be positively delighted. We don’t live that life. So hey ho. Onwards we go with all our piles and piles of just in case stuff.

NKH Awareness Day – Help us cure NKH

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It’s NKH Awareness Day today. I’ve been posting all week on facebook + instagram about NKH. Facts and trivia (as much as rare and terminal metabolic disorders can have trivia).

Here’s my ask: Instead of your usual flat white, please swap your coffee today for a donation. Please donate. Please donate. £3. £5. £15.

If donations aren’t your thing, please buy an Eva book (all royalties go to Joseph’s Goal). Please change your amazon smile charity of choice to Joseph’s Goal. Please change your profile picture on facebook to the NKH frame. Please share this post.

Today is the day, where once a year we as an NKH community make a big push. Our lives are hard – you know this. Not every family has the means or resources or support to fundraise, and so most families ask once a year, on this day.

Here’s what I can tell you. Your funds are making a difference. In the last year, there has:

  • Been the creation of zebra fish, mouse + worm NKH models. This is HUGE. Researchers can use these models to better understand how NKH works, at a much faster rate.
  • There has been progress in understanding how NKH works (in that it’s not *just* high glycine that causes issues, but also all the metabolic pathways that need molecules from the broken glycine system).
  • There has been progress in narrowing down which currently approved FDA drugs might work as a chaperone for NKH (this is also HUGE).
  • There has been signs that gene replacement therapy can be successful in mice (this is also SO HUGE, this is a CURE)
  • There has been research into replicating NKH into an algorithm for diagnostic use, which is HUGE and AMAZING and has the potential to help so many families.

There is more detail and more information that I can’t share, as it’s all unpublished and I’m being intentionally vague, but I want to share that progress is being made in NKH research. It’s progress that’s being funded by you.

For every £5 you’ve donated to Margot’s Marathon or Katy’s Run, or for every wine you’ve bought at a wine tasting, for every BV person who is doing Tough Mudder – you GUYS! You are paying for real research, real research that is underfunded, real research that has the potential to improve children’s lives dramatically.

So please donate today. Please go out and tell someone about NKH. Tell them about Mikaere. Organise a fundraiser in your office, a bake off, a poker match, a fun run. The stakes are small, and every single donation helps. Every single donation is funding research that will change lives.

Happy NKH Awareness Day. Thank you for being in our corner. We love you.

On moving between fear and loss

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In the NKH Community there’s a death bandwagon that happens after a family announce their angel has gained their wings. Hundreds of messages are sent to the family. Publicly every NKH page has an announcement, with a picture. It takes over facebook, really. Hundreds of comments are left for the family, and hundreds of comments are sent to the people who posted about the community loss. They have prayers, and are sorry for all the losses and are sending so much love (I’ve said those platitudes too, no judgement here).

I’m not sure how I feel about this bandwagon – this giant flood of not so comforting posts. I’m torn.

I’ve been that poster. I’ve posted about more children passing than I would like too. I said I was devastated, and heartbroken and struggling. But truth is for most of the children I’ve posted about – I’d never met that child. I’d known them through the community, through the posts that their parents made. The pictures they put up. The messages they sent. Halle Mae. Kaleb. Mayanak. Cathryn. Gregory. Siem.

I say their names to remember them. They’re important, and they were so loved and will be fiercely missed.

But truth is, I never met them. I don’t have relationships with their parents. The grief of their parents I imagine is huge and very much theirs. But I don’t know them and I can’t know for sure. My grief? I didn’t know it at the time but my grief is fear that it will happen to my child. I posted about these children in such a blithe manner. I really did. I had feelings and I took to the internet (I still am, clearly).

But now I’ve had tiny insight to the other side. Alexander, a boy I knew in real life outside of the internet and met, several times in the last two years died. I adore his Mama, and we’d send messages and do visits and invite each other to the few social gatherings we arranged each year. We’re on each others Christmas Card Lists. I knew he was ill and visited when I could. I knew when it was days and couldn’t visit and it broke me. They graciously let us know when he’d gained his wings, and oh. I had a whole lot of complex feelings, and I felt so strongly for his parents. I struggled, and thought of him constantly.

It was raw, this grief. Because this grief wasn’t about my son, it wasn’t about how I felt about NKH, it wasn’t a fear that one day NKH will take Mikaere. This grief was about Alexander, the dent he’d made in our lives and the hole that exists where he was. I was feeling his loss, specifically. His loss, and such compassion and love for his parents and their loss.

And after his parents let the world know and the memorial posts came flooding in I wanted to tell everyone to shut up. I didn’t, of course. They have grief and feelings and love and none of it was malicious and they have every right to post and make videos and share their grief and they should absolutely do that.

After some gentle examination I worked how I was upset because I could see the difference in my posts. The difference between grief and my fear for Mikaere, and grief that’s because I feel the loss for Alexander specifically. I wanted to say the later feels more genuine, I don’t think that’s true. It’s grief. Complex and unwieldy. I don’t know if that difference even matters. My grief is all over the place, and I’m trying to think and feel my way through it.

I’m struggling. I don’t know how to feel about it. But I do know that I want you to know about it. Not my grief and my feelings but I want to talk about grief. I wish there was more open, genuine talk about grief and death. I can’t help but feel that if we as a society were more open to grief and death, and if we were okay to sit with the uncomfortable together for one hot minute without trying to shy away or fix the unfixable the burden might be less. That we might be able to sit together to remember the people who are important to us, that we could openly feel and say how grief is complex. How death is unfair and brutal and a relief and grace and there is anger and pain and love and hurt and it’s all mixed in together. That we can love and miss and grieve openly without someone telling us to pull it together, or hide it away.

And I get how crazy that is, because here I am trying desperately (and openly) trying to come to terms with my grief over and over and over. In one post after another. I’m trying to be open to feeling what I feel around grief and death. Right now it feels so wrong, and hurts and it’s heavy and huge. I can’t help but think there must be some other way (or rather, that there must be some better way forward for managing those feelings). That there is a way to have a better and healthier relationship with life, illness and death.

We’ll see. I’m sure there will be more posts on grief.