Tag

emotional pitfalls

Oct 24
1

On yoga and safe spaces to share

By | #teammikaere | No Comments

I’ve started going to yoga. There’s a lady who does it in our local park for a fiver. When it’s warm enough, we go and we stretch and move and practise our yoga. I am not very good, but there is no judgement and my body feels better after. So off I go. Today there was a reading. I missed the beginning, I was in my own head.

But I caught the last bit, and it basically came down to don’t be afraid to feel what you’re feeling. Be vulnerable, explore your emotions.

I tend to bite down on my emotions. My logical, intellectual side is more mature than my emotional intelligence for sure. I usually only express those emotions in safe places, like therapy, or at home with Sam. Not in public. Definitely not in yoga.

But as our instructor urged us, I cautiously settled my mind, cleared my thoughts and gently took a peek. And then I slammed those feelings way way back into a tiny box and pushed it as far away from my brain as possible, bringing my thoughts back to the present immediately. The feel of the mat, where my body was grounded, the (more ragged than gentle) breath in and out. What I could hear. I thought frantically of what I was going to eat for lunch that day.

Fuck exploring those feelings at yoga.

There was only two of us, that day at yoga. And we chatted at the end. The reading came up, and the other girl said she really enjoyed it. It was helpful for her. She was feeling some residual conflict with an unbalanced friendship and was able to gently process her way through and let it go. I listened, fascinated. How amazing, genuinely, to have that be what needs processing. How healthy. I was jealous. Sure enough, the conversation turned to me, and what I thought of being vulnerable and open to feeling what I’m feeling.

I said it was difficult, because when I explored my feelings that morning what I got back was ‘please don’t die, please don’t die, please don’t die’ with such hope and desperation and love, it was overwhelming. My very rational fear of my son dying and it being a very real possibility is always right there just under the surface, it’s intense and overwhelming.

I had tears streaming down my face, and they were both taken back a bit. They clearly weren’t expecting this. They don’t know me very well, and they don’t really know me as the lady who has a son with a terminal metabolic disorder.

And then we did that dance. The not quite pity dance, but the ‘theres a definite need to comfort me but they don’t quite know what to say’ dance. The poor girl with the friendships felt that her problems weren’t problems (but they are, my problems don’t take away from anyone else’s problems) and they expressed how important it was that I look after myself and practise self care and how amazing and strong I am for parenting like I do.

I moved the conversation on to less emotional ground because that dance is awkward for everyone, despite the kindest of intentions (they really are the nicest of people).

Side note: if you’re at a loss for what to say, say “that sounds really hard. How are you feeling about that?” or if you don’t want to go deep and meaningful, “That sounds really hard. How is your son doing right now?” because chances are he’s fine and it gives me a chance to move the conversation to the positive.

We left shortly after, and my grief lingered all day. Long story short, yoga is not the place to explore all those emotions if you’re a special needs parent with a child who as a terminal disorder.

I’m grateful we have access to therapy and safe spaces to share. I definitely won’t be exploring all those feels in yoga again, that’s for sure.

Oct 22
1

On feeding into the world of pretend

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I talk a lot about the ‘what if’ daydream in my head.  The ‘what if Mikaere never had NKH’ daydream.  I think goes hand in hand with grief, with loss. When you grieve something has happened that you didn’t want to, the flip side is that there was another option, another path, another something that you expected/hoped for/wanted. For us, obviously, it’s that Mikaere didn’t have NKH. That he was neurotypical. That he didn’t have two little missense mutations in one tiny gene.

Daydreaming about what it would be like if Mikaere was neurotypical is a dangerous, dangerous past time. It’s like a sink hole, so I shy away from it. At the same time, I also want to confront what Mikaere is not – I want to rip that band aid off so that it doesn’t hurt so much the next time I’m faced with the gap. So that the developmental gap that’s widening by the day isn’t so unexpectedly large that it’s crippling.

So I straddle the line between hanging out with kids that are Mikaere’s age (thanks to our wonderful NCT friends and their gorgeous babes), the grief that he’s not developmentally where they are and imagining what it would be like.

I’ve noticed recently that when I’m having a hard day, when we have back to back appointments or Mikaere is projectile vomiting everything or the seizures are uncontrollable – I have a bad habit of leaning towards the daydream. If I’m writing posts, I’ll post the photo where Mikaere looks more neurotypical. That if you weren’t here behind the camera you wouldn’t even know. I like the photos where Mikaere looks neurotypical best.

There’s one photo I love. Friends of ours have a son that was born on the same day as Mikaere and we went to visit. I lay Mikaere down on the floor where he’s most comfortable and T roamed, as a toddler who has independent mobility is want to do. But there was a moment where T lay down next to Mikaere and they both laughed.

I love that photo. I love that T lay down and was the sweetest little guy. That he wanted to do what Mikaere was doing, with zero knowledge of disability or difference or anything. I’ll forever love T for that tiny tiny moment.

But I realised I love that photo because it looks like, just for a minute, what a neurotypical life could be like with Mikaere. It feeds into the world of pretend, if you weren’t there – it looks like two boys playing together. The reality is they’re not. T had a wonderful, kind moment with Mikaere before he toddled off and Mikaere had a moment of awareness that T was there, but the truth is they didn’t play together.

It’s insane how to the very depth of all I am I wish they had been. How much I wish Mikaere was neurotypical. He’s not, I know. But I struggle with the cognitive dissonance of knowing he’s not, and the emotional intensity with which I wish it was otherwise.

It’s been almost two years of this cyclic grief. Over and over and over again I battle with this. Over and over again I’m faced with such grief that Mikaere suffers. And when he’s not suffering, when he’s happy and content and smiling at us and making small gains – that his life will never be as full or as varied as a neurotypical life.

That he will never love romantically, to know those butterfly feelings when you meet someone. He’ll never know what it’s like to travel independently, to delight in discovering a new place with new people living differently to you. He’ll never know what it’s like to work hard and be considered an expert at something, he’ll never know the satisfaction of when your peers recognise something you’ve achieved. He’ll never know what it’s like to snowboard, to pick a line, to make fresh tracks down a powder black run on a bluebird day (Its been a long time since I’ve been to the snow, but it remains one of the greatest joys I’ve ever had). He’ll never know what it’s like to kite surf, or boogie board or cook an amazing meal for the glory of it. He’ll never sit in a side restaurant in Japan eating the best oyster of his life, or jump off the back of boat into crystal clear waters in Croatia. He’ll never be able to introduce someone he loves to the things he loves. He’ll never adventure with a group of friends, getting up to mischief. He’ll never feel the satisfaction of creating something others can’t.

These are my life highlights. I’m devastated the highlights of his life will be smaller than mine. And I know that these are all just the highlights, and he’ll also never experience the downsides of a broken heart or the culture shock of being somewhere out of your depth or break a wrist taking a jump with a bad landing. But fuck, aren’t the highlights worth it?

And the hard thing, the thing I really struggle with – this grief is cyclic. It’s never ending. For as long as Mikaere lives – and past that, I suspect for as long as I live this is something I’m going to carry. This big dark grief that my child will never have the opportunities I did, that he’ll not live a live as full as others and he’ll forever be disabled.

I know for certain it’s this grief that pushes me to fundraise. That pushes me to figure out the next thing I can do to raise more money for NKH Research. That this big, dark stupid grief fires that ‘do something about it’ tick I have. And so I push and I design and I build websites and read research papers and oh god, the whole time I’m furiously wishing my son wasn’t disabled.

He is though. So onwards we go.

PS – if you want to donate, as always, we’re fundraising at justgiving.com/team-mikaere. All funds go to Prof. Nick Greene, who is researching a cure for NKH.

Oct 15
0

On a hospice stay

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We’ve been working up to a hospice stay, overnight for ages. Technically Mikaere probably could stay overnight without us and be just fine. Probably. However my mama heart is NOT okay with him staying over alone at hospice. I’m just not. I have the fear, that fear of what if something happened and we weren’t there?! The guilt would be unbearable – the world of living with a terminal disorder is a bit shit. So I have the fear and we haven’t done an overnight at hospice since we left in March last year.

In kind of the same vein, I can also count on one hand the number of times I’ve been out with Sam without Mikaere. Date nights in are only so beneficial when you lived an adventurous always-out before-baby life. The mental refresh that comes with being out of the house is huge. Even more so when it’s without the mental strain of anticipating all the requirements that come with caring for a complex needs kid.

We’ve been seeing a therapist who is attached to our hospice (because the special needs life is hard, yo) and this is one of things we talk about frequently. For a hospice stay to be helpful we, as parents have to be relaxed and trust the people caring for our child. The idea of being relaxed while my baby is not safe with either me or Sam is a contradiction. So we worked on trusting the hospice. We go regularly for swims and visit their preschool program. We enjoy the hospice at home visits and like the nurses.

You guys, our hospice is GOOD.

And so, after months and months of talking about it and visits and reassurance we booked in a one night stay. Kai would stay downstairs with the nurses, Sam and I would be up in a parents flat upstairs. It would be on a weeknight, so things are less busy and Sam and I would go to out to dinner in the town nearby. There was a preschool group the morning off, so went out early for that which was excellent. Mikaere fell in love with the man who played the ukelele. He enjoyed a fab time running his hands and feet through raspberry jelly (seriously, messy sensory play is so fun), we had a swim and he fell asleep for his afternoon nap pretty content.

The overnight part of the trip had a wobbly start. The handover which was meant to be at 3 wasn’t until 4:30, which meant that essentially I was looking after Mikaere right up until after his 6pm feeds and meds (so zero respite, considering I’d done all the hard work) but after handover finally finished, I kissed my baby goodbye and left with Sam.

Dinner was lovely, spending time with Sam was without a doubt the highlight of the whole trip. I’d missed being just us. But I wasn’t super settled. I shook that off as nerves and figured that’s just how I was going to be the whole night, so leaned in.

When we returned Mikaere was fine, sleeping like a champ in the nurses station with the nurses. (He sleeps where people can see him, because silent seizures are a bitch)

Everything went down hill the next morning. I got up early, showered and dressed for breakfast (and to check in on my boy). He was sleeping, fine as you can be. The problem is when I started doing handover. Packing up all his gear (which was all over the place). I knew we’d need a blend done – we weren’t going to make it home before his feed and meds were due. But I’m not allowed to blend in the kitchen (parents aren’t allowed in the kitchen, no exceptions) and the there wasn’t enough room in the milk room. I was directed to the coffee station – a small tiny kitchen with a bench big enough for making coffee. I wish I’d had the foresight then to say fuck no, but I didn’t. I trusted the nurses and off I went, blender and food in hand.

Fuck me. Every second person that walked by wanted a coffee. Some were polite and waited. Most weren’t, most were reaching over the top of the blender or across Kai’s food as I was prepping. There must have been at least twenty people trying to get around me, one after the other. They were very British (Oh excuse me, Sorry, if I could just, hope you don’t mind) but this was my kids food and strangers reaching over me constantly getting the way made me furious and stressed. Just fucking wait for your damn coffee!! I was raging. I’m raging just thinking about it.

By the time the blend was done I was ready to scream, I was well upset. Fuck the hospice, if I can’t blend in the kitchen (because parents aren’t allowed in the kitchen – which is the stupidest policy, considering I would have been supervised by the chef, or fuck, if the CHEF could have blended his feed that would have been even better) and the place I’ve been directed to is the coffee corner – fuck off. Never again.

That’s not the worst of it, though. What happened next makes me want to never go back. When I went to go check out the meds, we found two boxes were MISSING. Considering we had to sign each box in and it was kept in a locked cupboard there were alarm bells. I wasn’t too worried, because what was lost was a supplement and one was a med we rarely use, but if it had been one of Mikaere’s main meds which are notoriously difficult to order and get in (they’re on special order from our hospital only. One is shipped in from the states for us especially) I would have been livid. What were they going to do for the next med round?

Then I found out the nurse on that morning hadn’t followed the care plan in terms of his breakfast. Wtf. She just decided it wasn’t for her and so didn’t feed Mikaere the food that had been set out by both me and his dietician. WTF doesn’t even cover it. It was CLEARLY in the care plan, and the care plan is not optional. It’s not fucking optional! I’m grateful it was just the food they decided to ignore, because there could have been disastrous results if they’d chosen not to monitor him overnight or given him the wrong meds (or not given him meds at all). Fuck me.

I was already stressed af and this was the breaking point. Done. There is no trust anymore. I’m done. No more overnights at hospice. We have night nurses, we have support during the day. We don’t need overnights at hospice. They’re not us, the building is not home, meds are being lost and careplans aren’t followed and strangers are reaching over as Kai’s food is being prepped. Too many things went wrong on a single overnight stay, too many things went wrong when I let strangers take care of Mikaere. This may be their jobs, but this is our child. Too many mistakes happened for me to be comfortable doing it again.

I’m not saying hospice respite is terrible. I think hospice is awesome for those special needs kids who don’t need constant monitoring, who don’t have immune vulnerabilities and who are able to sleep in their own beds the whole night unattended without their parents wondering if their baby will still be alive the next morning.That is who I think hospice respite serves best.

That is not us. So. No more hospice overnights. I don’t want to repeat that experience again. Despite the wonderfulness of spending time with Sam, it was not worth the risk.

Instead we’ll ask our night nurses to babysit for a few hours and go to dinner somewhere local, somewhere less than five minutes away. Not yet, I’m still reeling from the hospice respite, but one day soon. Maybe. We’ll see.

Oct 12
0

On the developmental quotient

By | #teammikaere | No Comments

One of the things newly diagnosed NKH parents worry about is severity. There is a range: Severe is at one end. Severe means that neither mutation is producing any protein that can be used by the body. Any protein that is made is probably unstable and falls apart to be recycled. Severe is what we’re primed for – disabled, seizures, developmental delay, early death. No walking, no talking, not eating. Perhaps smiling – a developmental milestone usually hit in the first few weeks – that’s the total brain development we’re told to expect of a severe child.

At the other end, there’s attenuated – that’s a whole different kettle of fish. Some children you wouldn’t even know have NKH. They’re walking and talking and going to school and are picture perfect (I met a boy who had very mild NKH in March. I literally couldn’t stop staring. I wanted to hug him, but as a stranger to this teenage boy, I refrained). It steps down in degree’s from there. Walking and running (or sometimes non-mobile) and/or talking up a storm (or non-verbal) and/or eating (or bolus only). There are a lot of other issues, too. ADHD, severe behavioural tantrums, autistic like behaviours, hyperactivity movement disorders (dystonia, chorea, ataxia).

As I understand it, it’s a huge range split across three categories: Attenuated Poor. Attenuated Intermediate. Attenuated Mild. You can’t tell which category is which until the child is much older (around 2), and they’re showing signs of development. The rate at which they develop – thats what defines which category you’re lumped in.

What this means first and foremost is that at the time of diagnosis (typically a few weeks after birth) it’s impossible to tell severe or attenuated, unless your child has two of the handful of mutations which have previously been expressed to show how much protein they produce. Regardless of this almost every parent is told their child is severe. If a doctor see’s your child as sleepy and lethargic (even if it’s just a bad day, or post seizure) they’ll lean towards severe. Severe is where we’re primed to be, and severe is what we fear in that newly diagnosed haze. Severe is the safe worst case scenario.

Thing is, it isn’t until our babes start developing that the severity of NKH comes to light.

There’s a slide in a talk done by one the NKH researchers that spits it out:

Attenuated Mild: Developmental Quotient 50-80
Attenuated Intermediate: Developmental Quotient 20-50
Attenuated Poor: Developmental Quotient <20

The Developmental Quotient is a score – it’s the developmental age divided by the chronological age. As the parent of a developmentally delayed child – that’s a scary score. In my ignorance, I know Mikaere’s delayed, but I don’t know *how* delayed. Very seems nice ambiguous score. I know he’s not even close to his peers, and he’s been passed by babies a year and a half younger than him, but there’s nothing concrete to latch on to.

And that was fine until in Boston I spoke to researcher, showed him a few videos of Mikaere and after a pause, he said Mikaere was unlikely to be severe, he was showing milestones that perhaps put him in the attenuated poor category. This same researcher had seen Mikaere a year before and had said without a doubt he was severe at his current presentation.

Attenuated Poor. That shocked me. What would attenuated poor mean for us? Would it mean more time with Mikaere? What would our future look like? Will I (dare I even hope) need to be looking at support and facilities and special needs schools? (Will we make that it that long?) – what kind of support will we need? Will we make it to the world of special needs vans and hoists and support with a teenage Mikaere (Can you even IMAGINE?!) Attenuated Poor threw me off my severe, live in the short term kind of mentality. What would attenuated poor mean for us as a family?

How do we make quality of life decisions for our family with such uncertainty in our future? You can see the kind of emotional mess my brain went to with the words ‘attenuated poor’.

But I’m also kind of a logical person, so my first port of call was can we confirm that Mikaere is, or isn’t right now, on the attenuated poor scale? Which is where that Developmental Quotient came in. It would tell me. There is a standardised test and a score and NUMBERS. I never wanted to know how delayed Mikaere was before and now it was all I could do to not do the test myself.

In the studies that discuss NKH Severity, there are three scales of development that could be used: the Bayley Scales of Infant Development, Mullen Scales of Early Learning, or Wechsler Scale of Intelligence. The Bayley Scales is the typical standardised measurement in the UK, and our physio was trained in assessment. So off we went. She came and Mikaere was assessed.

It’s heartbreaking to look at the long list of milestones by age and know your baby can’t do the majority of them. What a knock. Still, I cheered for everything Mikaere could do. We marked off some milestones, which is positive (he’s on the scale, you know?) and just – we got through. I had to remind myself that MIkaere hadn’t changed. Mikaere was still his happy little self and he couldn’t do anymore or any less than he was yesterday. He’s still just fine on his own little path.

Deep breath in. Slow breath out.

We got through the assessment and I put it out of my mind until the assessment report came.

Cognitive: Age equivalent: 3 months.
Language Receptive: Age equivalent: 3 months 10 days.
Language Expressive: Age equivalent: 6 months.
Motor Fine: Age equivalent: 2 months
Motor Gross: Age equivalent: <16 days

Mikaere was 21 months when we did the assessment with an average development of about 3 months. Oh my heart.

DQ Final Score: 3/21= 0.14 or 14%

But there we go. The numbers are pretty clear. Mikaere’s solidly in the Attenuated Poor Category.

Oct 05
0

Please stop telling me how strong I am

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Please stop telling me how strong I am. Please stop telling me how amazing I am, how great a parent I am for managing ‘so well’ under such difficult circumstances.

I’m not doing anything any other parent does. I love my child, and I do everything I can to ensure he’s as happy and as healthy as he can be. Just like any other parent. Ours days are a nuanced expression of both joy and grief, frustration and fear alongside victory and hope all at once. I delight in my sons smiles as much as I grieve that smiling may be all he can do.

When you tell me how strong I am, you make me feel like I can’t tell you that I’m struggling. I can’t tell you how overwhelmed I am, I can’t tell you when I need help. I can’t tell you that we’re having a really hard time and that I feel so alone and isolated. I feel like as a caped crusader of strength I can only smile, take your platitudes and say ‘We just do the best we can’. I feel like I can only share the battles we’ve won, I can only share the good and not the nuanced whole picture.

There is a guy at Sam’s work who has an adorable baby who has sleep difficulties. He’s having a hard time managing, understandably, as would anyone who is sleep deprived.

Except that this guy literally said the words “I don’t know anyone who has had as hard a time as we have.”

This guy has met Kai numerous times. This guy whose child has never been in hospital outside birth, never been on end of life care, or on a ventilator to breathe or in ICU. This kid who has hit all his milestones and grins and plays with his toes. This kid who is perfectly healthy in every way. He goes to bed at night and wonders if his kid will sleep more than a few hours. I go to bed at night and wonder if we’ll end up in hospital before morning arrives.

This guy is in his sleep deprived bubble, and he gets to tell his friends about how hard it is. I, on the other hand, get told how strong I am, which stops any venting, any kind of sharing of the real difficulties I’m facing, the emotions I’m having a hard time processing. It isolates me.

This in part is why I blog. It gives me an outlet, passive sharing. No one can stop a blog post half way through with ‘but you’re so strong!’

But passive sharing is lonely. It’s a one way street where I broadcast out to you all. I don’t doubt I’ll get a few comments about how strong/amazing/great we are.

So please don’t. Please don’t tell me how strong I am, or how much in awe you are of how we parent in the face of adversity. Instead, ask what we’re struggling with, ask what we’re loving. Ask if we could use a visit, or just call for a five minute catch up. Just check in, a two minute FaceTime to say hi would be game changing to my otherwise very lonely, very isolated day.

Let me share, in a moment just between us how I am, and then I’ll move it on, I promise. It might be heavy, it might be light. But please, please, please, stop telling me how strong I am.

Sep 21
1

On saying goodbye to Alexander

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Alexander was the very first NKH child we ever met. We were in hospice on end of life care and they drove up, from over an hour away to meet us. He opened our eyes to what was possible. That we might survive that stint in hospice (we did) and that life with NKH was absolutely possible.

Since then we’ve made a point to spend as much time as we could with them. We drove the two hours for their Halloween party last year. When he was in hospital I drove down again. Earlier this year when they were in a London hospital, I armed myself with delicious takeout  and we sat around his hospital bed catching up. Earlier this year we did a meet up with Eloise, Neil and Doms as well as Kirsty, Jon and Alexander. What a fun day that was.

Alexander’s beautiful, with the longest eyelashes you ever did see and the most piercing blue eyes. He’s got such presence. His parents have been an amazing source of comfort for us. They’ve been our cheerleaders, they’ve been a wealth of information. And they’ve also been fun. Jon is into Formula One like Sam, and when Jon stayed at ours instead of the hospital they flew drone simulators together.

They love their son with such overwhelming fierceness it gave me hope for what life was going to be like with our son. That it was possible to live on fierce love, that it was possible to survive all the adversity on love alone.

Earlier this week Alexander died.

Devastation doesn’t have enough meaning to explain the hole he’s leaving in so many lives. The giant hole he’s leaving in ours. Alexander was a fighter and he fought such a phenomenal fight. He dictated how things went right to the very end, and was a phenomenal, phenomenal person.

He is so loved. So so so loved. So many of us are broken and the world seems like a darker place without him. Alexander will be fiercely missed.

Fly high Alexander. We love you.

Jul 28
2

On cancelling

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Ahhh. Before Mikaere I couldn’t understand people who flaked. People who would agree to a time and date and event and just not show or would make excuses or whatever – I really struggled to empathise. As a person, I might be late but I prioritise getting there. If I say I’m going to be there, I am.

Today Mikaere and I were set to see a friend and her sweet 6 month old baby. It had taken us month to pin down a date and it was going to be in a lovely pub with a beer garden and the weather forecast was set to perfect. Except that just before 7am we were woken by our night nurse. Mikaere had a temperature. His chest was junky. He had a cold.

Womp. Wooooooooooooommmmppp. The offshoot of this is the more seizures he has as his body attempts to fight it off. Which has the delightful second effect of more vomits as he can’t handle the secretions when seizing. So much vomit.

I hate this. Was it because we were at the hospital yesterday? Because we had friends with kids over for dinner? Was it the small boy who made a beeline for Mikaere’s buggy and touched him before anyone could stop him? Was it someone at Sam’s work? Was it a stranger while we were on one of our walks?  Was it because I’ve been a bit more lax with the sterilising? That I just washed his spoons in soapy water and didn’t run them through the steriliser? I did say recently that it would be nice to build up Mikaere’s immune system a bit more, do less sterilising, have him hang out with more kids…

I’d forgotten how hard colds are Mikaere. So I take that all back, fuck building an immune system if it’s going to be so difficult for Mikaere to fight through.

I hate this. I hate that he’s sick. Hate that we’re constantly cancelling (I’m so, so sorry to everyone we’ve cancelled on, and I’m so grateful for your understanding and grace). I hate that my boy struggles so. Mostly I hate NKH. Positively loathe it. (So much so that I put it on a t-shirt and I wear it frequently).

Hopefully this cold will roll on by in the next day or two, but we’re battening down the hatches till it’s on it’s way. Send us immune-boasting-get-better thoughts.

Jul 09
1

On finally putting on weight!

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Woohooo!!!!! Thank fuck – Mikaere is gaining weight again. It was scary to watch his weight fall off, the beautiful chub of his cheeks disappear, his little arms and legs get more defined. That with every vomit I knew he was losing calories, and I watched at our weekly weigh in as the numbers went down and down and down. He got to under the 20% percentile – which isn’t a huge deal. He looked healthy (everyone kept saying he he was growing up, but it was because he lost all his baby weight!) and was still alert and aware, still active. There was a reason he was vomiting (#borderlineGastroRegret) and so we were reassured by our team that it was okay.

But as a mama, it was NOT okay. There was always the fear from our dietician that if he couldn’t get his weight up a ‘nutritionally complete’ formula was in Mikaere’s future, and as someone who hates the idea of processed anything (particularly when some of the ingredients are high in glycine aaand its stored in plastic bottles – so terrible!) I went on the offensive.

The first trick was getting the vomits down – we reduced his feeds from 4 meals with three snacks to four meals period, increasing the calories and the feed time, reducing the volume. We got to three hours on/three hours off. We hadn’t been on this schedule since we were on end of life care in hospice.

We moved away from regular formula to the blended diet where I painstakingly worked out the calories of each blend, going for high calorie low volume (he eats a lot of avocado, peanut butter, coconut oil and coconut yoghurt). It’s hard work and I have spreadsheets coming out my ears but you know what? It WORKED!

Because my baby is putting on weight. There is something beautiful about all that hard work and extra effort paying off in tangible numbers. Something beautiful that is mostly epic amounts of relief.

It’s even more likely that his was putting on weight had little to do with me and more because Mikaere very gradually stopped vomiting as frequently. For every feed he kept down he gave himself a better chance of putting on weight. That’s not to say the vomits have stopped, because they haven’t. We’re still at at least a vomit a day. Sometimes too. But against the 4-5 vomits we were having? I’ll take that improvement. In fact, even yesterday he had his first vomit free day in forever, so that’s positive!

I feel like I’m on high. When he reaches the 50th percentile, I’ll reduce the calories to a more appropriate level and start adding in more nutrition. We’re not there yet but that his weight is going up? I’m pleased. So so pleased.

 

Jul 04
1

On getting a new carseat

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Mikaere has outgrown his baby carseat. His torso is too long and his shoulders are too wide. But because he’s so floppy there are few things we need: it needs to recline, it needs lateral support. We’d also ideally like a rear facing, swivel seat that fits in the front seat.

We went up to Milton Keynes and met the special needs lady at the In Centre Car Safety place. There were exactly two seats that might work for Mikaere, and only one was in stock. Womp. We wanted to wait for the second to come in before we committed. So we waited and waited, and Mikaere grew longer and longer and eventually his shoulders just plain wouldn’t fit.

A few weeks after, we happened to be at our friends place, who also has a special needs child. They offered us their old car seat which Max has grown out of. A Britax Dualfix Römer. It swivelled, it was rear facing and it reclined. We knew the (crash free) history. Amazing. We were grateful for their generosity (because we’d at this point be getting a charity grant for a new seat that may or may not work. Either that or we’d very gratefully fall on the generosity of our family).

So we fitted it and off we went. Now, it’s not perfect. Because of the angle of our car seats (boo racer seats) Mikaere is uncomfortably sat almost leaning forward when rear facing, even when the seat is reclined (when it’s not reclined he topples forward). So we swivel it around to forward facing, which works better (but I cringe on the inside, I know how much worse it is to be in an accident with a forward facing car seat. I’ve seen that gif and I hate it).

Also, there’s no lateral support. There’s room to grow, for sure, but in the meantime it means he kind of crinkles in on himself. It means we use Ellie Ears to support his sides and a trunki to support his head, and it doesn’t work well with the helmet so we pull that off every time he goes into the car. It’s a bit of a faff. You can see how rubbish Mikaere’s posture is when he’s in it:

Don’t get me wrong, it’s a hundred times better than being in a too small car seat, and a thousand times better than some of the other car seats we’ve tried. We’re grateful (beyond grateful) to even have the seat we do. It’s just not the ideal carseat. It’s about 80% awesome.

When we’re in the world of trying to provide enough postural support to fend off the future risk of scoliosis, I have the fear. 80% awesome is about 15% less than I’d like.

The last option we’re looking at is the 2018 Kilppan Kiss 2 – the car seat we’re STILL waiting to come in.  It’s been hailed as the all supportive, all singing and dancing chair that might be appropriate for Mikaere. But we don’t want to buy it outright (at £450 a pop) over the internet in case it isn’t inappropriate. So, we’re waiting for it to be in stock at the In Car Safety Centre for us to try (they’re the UK stockists).  Except we’ve been waiting almost 9 months now. So frustrating. Another 6-8 weeks, they told us. It could be 6-8 weeks. It’s more likely to be another 6 months.

Do you know what else? It blows my mind that there isn’t a car seat service, or place that caters specifically for car seats for special needs children who require extra support. It blows my mind. Frustrating af.  Even if there was just in insert that would bump up the supportiveness of our current car seat, that would be excellent. Blah that that service doesn’t exist.

In the mean time we try to make it work, we do the best we can. I try not to get down on the idea that this something that neurotypical parents don’t have to worry about it – but I can’t help put feel they have an easier job it in regards to car seats. Hey ho. I’m trying really hard not to be too bitter. I guess I should practice grace? We have carseat that swivels. Its safe for Mikaere, and we were so lucky to have such generous friends….

It is all those things, and I am grateful for all those things, but I still feel very blah about carseats that aren’t fully supportive. Womp. The special needs life is already difficult, so things like this which require lots of money, some puzzling and lots of time calling places and talking to people add’s difficulty to an already complex life. Blaaaah is how I feel about that added difficulty. Still, onwards we go.

Ps – our OT did some investigating and there is a charity that will do an hour long assessment to help you fit a car seat… for the heavily discounted cost of £150.  Wooomp. And that’s just for the assessment! That doesn’t include I’m sure any travel times, fitting costs or extra whats-its that we’re going to need. Did I mention that we’re a one salary family now because I had to give up my job to care for Mikaere?! How are are meant to afford all this extra stuff?

May 23
2

On Reviewing the End of Life Care Plans

By | #teammikaere | No Comments

There’s an appointment I always dread and it happened last week. We met with our palliative care consultant at Hospice. She’s really lovely, has a keen sense of humour and is generally very sympathetic. She’s also incredibly practical and straightforward which I enjoy.

It wasn’t our palliative care consultant that made me dread this appointment, though. It’s that every six to nine months (acute events or slow declines not withstanding) we review Mikaere’s end of life care plan. Which is to say we go through, step by step and say, if the worst case scenario happened – at what point do we say enough is enough.

Blah. Just BLAH. My son is beautiful and right this minute chirpy and smiley and very happy kicking the crap out of some shredded paper. I hate having emotionally to go to that dark place. To remember the time he turned blue, that time he was in a seizure coma and then really think about his quality of life and the quality of death we’d wish for him. I hate that bit too. Thinking about his death. I mostly block out that it’s a very real and likely possibility. It just seems so unlikely because he’s so beautiful and alive and aware and happy. But mostly because I don’t want it to happen. It seems unlikely because I don’t want it to happen.

But then I think about to Halle Mae who gained her wings only a few months ago. I think about all the NKH babies who have passed and I know for certain it’s a possibility.  And if it’s a possibility, then having a plan when we’re not in the world of grief, having something to fall back on and not have to make those decisions when we’re emotionally struggling is a good idea.

But to have a plan we have to consider the worst case scenario and I hate the worst case scenario.  Even worse, this time it was just me. Sam had to work, so there I was. Our palliative care consultant, a palliative care nurse, our carer and a lady shadowing palliative care in hospice (because the more the merrier, apparently). A whole panel of people.

And we went down the list.

Our first scenario is an acute deterioration, which is to say “in the event of a sudden collapse with respiratory and/or cardiac arrest, where breathing and/or heart stops, we agree to”:

(it starts from the least invasive treatments)

  • Airway positioning. Yes. Do this. Reposition his airway, for sure.
  • Suctioning. Also yes. If we can get him breathing again with suction, it would be silly not to.
  • Oxygen. Yes. Yes to O2 through a nasal cannula.

These ones are all easy ones. They don’t hurt, they’re temporary and won’t cause any long term damage. The next one is:

  • Mouth to Mouth/Bag and Mask Ventilation for _____ minutes until parents are present or ambulance has arrived.

We said yes. For 5-10 minutes. And we debated every single one of those minutes, and the whys and whats and all the scenarios. It was hard not to say you do mouth to mouth for as long as you need to. It was hard to find the point to let go and that 5-10 minutes is our point. I even called Sam, interrupting his work day to help talk it out.

Because the next one?

We said no to External Cardiac Compressions.

We said no to CPR. I hate that we said no, but thinking about whats best for Mikaere rather than whats best for my emotional state… it’s a no.  With a child, cardiac arrest is typically caused by respiratory arrest (the opposite is true in adults). Which is to say, if Mikaere has stopped breathing for long enough, it’s likely to also stop his heart from breathing.

If his breathing had stilled for long enough that his heart stops beating despite our interventions that’s a big big problem, cardiac compressions are likely to break his ribs and he’s still unlikely to survive. Quality of death. That’s what I keep telling myself. Quality of death is just as important as quality of life.

The rest? They were easy to say no to.

  • No to Endotracheal intubation and technical ventilation.
  • No to advanced life support with drugs and intravenous access.

No thank you. We’ve been there before, with both those scenarios. And considering the quality of life following those scenarios… we genuinely feel it would be better for Mikaere to pass. Quality of death, quality of life.

This scenario was by far the worst one. The acute deterioration, where it happens swiftly and unexpectedly. The other scenario, a slow deterioration instead of an acute event we’d be able to see it coming. It would be increased seizures, reduced consciousness, and Mikaere would increasingly be struggling to maintain his airway.

In this scenario, we’d do everything we could, up until intravenous access (with still no to mechanical ventilation). But with a slow deterioration, we’ll have the time to consider what’s best. We’ll have time to think on whether each intervention is right. The main point here is that we’d be able to transfer to hospice on end of life care if need be. There isn’t a point where we’d say we want to go to hospice. If it was anything like last time, we’ll all know it’s time. We’ll have the support we need to decide what’s best for Mikaere.

To be fair, we can change our minds at anytime about anything on the plan. We’re not locked in, but I think if it happens it’s best to have a plan. I know how crazy it gets, how fast everything moves and how you can get into a knee-jerk reaction only mode. How you can be so overwhelmed with all your feelings that thinking logically isn’t possible. That we might be still processing our fear and our grief to clearly think about whats best for for Mikaere.

Still, I walked out of the room heavy. So so heavy. It was beautiful day and Mikaere was happy, but it was a really really tough day. I’m glad we have a plan to which we agree on, but I hate we even need a plan. I hate NKH, I hate that we’re planning for his death. It’s horrific.

So, a cure, hey? That’s what we need. I’m thinking on more fundraising opportunities – because that’s what gets me through, and that’s what gives me hope. Wine tasting later in the summer – what do you think? Anyone keen?