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Ellly

Sep 28
1

On the eye gouge

By | #teammikaere | No Comments

I woke this morning just early enough to do handover with our nurse, but I could already hear Mikaere grizzling. It was a rough morning, nothing would console him. We cancelled our morning appointments and hunkered in for some hardcore settling. At some point between the singing and the bouncing and the petting, I noticed that in Mikaere’s right eye there was a scratch. Literally, on the lens of his eye. Wtf.

Mikaere’s recently been able to reach his face with his little hands and usually he goes for his mouth (his aim is a bit shaky, sometimes he makes it, sometimes he doesn’t). I rang our CCN (our Community Care Nurse – our first port of call always) because wtf. Should I be concerned? Does he need drops? Will it heal? (Do lenses heal?!) I had no idea. I can talk to you all day long about bloods and metabolic process systems but eyes? I don’t know very much about eyes.

Essentially our nurse said you don’t mess around with eyes, so we should go to the urgent eye clinic, but we needed a gp referral letter first.

Blah. We don’t go into our gps office (exposing Mikaere to sick groups of people in waiting rooms is something we try to avoid) so I called to organise a home visit. Except, after speaking to the oncall gp (a delightful Dr Bailey) he said he didn’t need to come out to verify there was a scratch on his eye. If I said there was a scratch there was a scratch, so without much drama he emailed us a referral letter (this is why he is considered delightful – it’s so nice when our team makes things easy for us).

Armed with our letter we made it down to the hospital… only to find out that the morning clinic had ended five minutes earlier and we’d have to wait for the afternoon clinic an hour and a half away. Womp.

Also, Mikaere needed a feed and I’d forgotten the hot water in my rush to get out the door (fail). So, back to the car with all his gear and we drove through the nearest McDonalds Drive through where I got a tea with no teabag (because apparently they won’t sell you hot water – what a day). Feed and meds done in the car park, drove back to the hospital and back into the eye clinic. Eye clinics are my favourite – the people at eye clinics aren’t sick with nasty chest infections. You can’t catch eye problems just by being in the same room. Look at all the otherwise healthy people with no respiratory problems! Best waiting room ever.

I spent the next 45 minutes trying to keep Mikaere awake (which was fun for everyone) and then we saw the doctor. She did her magic with some eye drops (top tip, pull the bottom eyelid away and let the drop fall in the well you’ve created – MUCH easier than trying from the top eyelid!!) and using her UV light the scratch light up like a neon line across his eyeball. (Again, wtf).

Essentially, The doctor said he had scratched his eyeball. Probably with his nails (!) and it probably hurt like a paper cut, but in his eye (!!). She said it would heal (thank goodness) but in the meantime she’d provide drops to make sure it didn’t infected and to keep his fingernails short.

What a day. So, we went home armed with drops and now I spend all day yanking Mikaere’s hands away from his eyes. Eye gouging. I still can’t believe it.

Sep 26
0

On grief

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It’s taken me four months to post this. I don’t know how to talk about grief. I don’t know what to feel, or what’s appropriate. Is there an appropriate way to grieve? A beautiful baby boy has gained his angel wings. He didn’t have NKH, the underlying cause of his disability wasn’t diagnosed. But he was part of our special needs playgroup. He was in our Monday morning gang.

I feel so all over the place. In the beginning, I cried endlessly for this small sweet boy. But I felt out of sorts, grieving, because I also feel like I’m so far removed from their family, because it’s just a playgroup, but honestly I’m devastated. For him and his family. Is it inappropriate that I feel an inordinate amount of grief for him? Is it even inordinate?

I cry for us, too. Because I feel like, despite my best efforts, I’m now constantly looking out for signs that Mikaere is on the precipice of an acute deterioration. For the longest time, I felt that genuinely he wouldn’t pass, that all the doctors were wrong and he’d have years ahead of him. That the ‘terminal’ part of his disorder was just a label, but not really one that applied to Mikaere. But now the sweetest little boy who should be here and fine is not. And the word ‘terminal’ as it applies to Mikaere has taken on a new, scarily finite meaning.

I was unprepared for the grief I feel. The shock of it. It feels messy and all over the place and the big overarching and devastating truth is one day it will be us. It colours my grief, which perhaps is why even the merest thought causes a moment of tears.

I’m so overwhelmingly filled with compassion for this little family. But I don’t have words and I refuse to say the platitudes. I don’t want to add to their grief, so I grieve privately. And then I feel like my grief must be minuscule compared to theirs (which just seems unimaginable and huge and so unfair) and should I even be feeling this way considering how tenuous our link? A link which I’m absolutely gutted will be no more, our after group catch-ups will be done now.

Grief is messy and I feel like I’m continuously finding new depths in what I feel about death and terminal disorders. I’m all over the place. Everything feels huge and bitsy at the same time. Like I’m trying to fit the uncertainty ahead for us and the unfair and too early deaths and all of the it-wasn’t-meant-to-be-this-ways together but the puzzle pieces don’t fit, so it’s all jagged and confusing and what do I do with all these feelings I have?

I spend hours thinking about the nature of grief. Of disbelief and how when you think you’re okay it smacks you in the face. Of how our therapist talks about snakes and ladders and shock. How you can’t know, hour to hour day to day how you feel (will you go up a ladder? Down a snake?). How I read somewhere that your grief doesn’t diminish with time. It’s that your life grows as time passes and it becomes easier to manage. I wonder how we’re meant to grow as people when our live distils down to our special needs baby and his needs. Our world revolves around Kai? How do we outgrow that? How are people meant to grieve and grow?

I sometimes think about that Frank Turner Song, Long Live the Queen. The line goes “We live to dance another day, it’s just now we have to dance for one more of us.” and I think how I’d want to live extra for everything that Kai couldn’t. And then I think back to what our therapist said, about living in the moment, enjoying the moment. Acknowledging where we are but also not denying ourselves fun and happiness right now. Choose joy, she said. I think about how hard it is to enjoy the moment when your future is so uncertain.

A friend told me once that something more than momentary happiness is intertwined quite heavily with three things, are you safe? Are you connected? Are you heading towards a purpose?

It’s hard to apply that to the special needs life, because my family isn’t safe (with a terminal disorder, not really), we’re constantly trying to manage the giant span between those with neurotypical children (the life we expected to live) and the highly medicalised special needs life, and we’re heavily isolated in the world of medical everything, and my purpose for anything other than Mikaere switched off the moment he was born, and as a special needs Mum my purpose only lasts as long as Mikaere is with us.

So, enjoying the moment feels like we’re trying to cling to the good the best we can while we wrangle with the idea that the larger building blocks of more substantial, satisfying happiness is generally denied to us.

My thoughts are all over the place, I keep jumping from one metaphor to the next, as I try make sense of it all.

Really the special needs life is utter shit for all involved.  I feel like enjoying the moment is to accept the shit, to accept that we’re headed for heartache, and I can’t do that. We’re essentially struggling with a life of grief and uncertainty and hardship and I don’t know how to feel about that. I just don’t. Instead I’m desperately trying to make time for the small moments, the moments with Mikaere where he’s feeling joy. I feel like I’m trying desperately to enjoy every moment with him, but it’s hard to relax when I’m so worried.

I feel like I’ve been thrown into this whirlpool of grief and terminal disorders and it’s overwhelming. But when I distill it down, mostly it’s been a time where I think it’s beyond horrid this sweet little boy gained his wings. And I’m so sad for his family, so upset at the loss for everyone who knew him. I hope he’s at peace. I wish his family peace and relief in the face of profound grief.

Fly high Rauirí. You were well loved and you’ll be fiercely missed by so many. You had a huge impact on our world.

(Even saying that doesn’t feel enough to convey the emotions I have for this whole situation. There are no words to convey the complexity of this kind of grief).

—-

Fourth months on I still feel as strongly as I did when I wrote this. But the upside is that I still see his Mum and I still remember Rauirí on a regular basis. I think of him most days. Grief is a multi-faceted crazy thing, and we live within it. The special needs life is such a bizarre life to live. If you’d like to donate, Rauirí’s Dad was raising funds for Small Steps with an epic bike ride with his work here or the family asked for donations to Shooting Star Chase, Rauirí’s hospice.

 

Sep 24
1

On vision

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In the last few months Mikare’s vision has become more… pronounced? He’s able to see more, he’s LOOKING at more. Before he was quite… disengaged? Is that the word? It was as if he was using his ears to ‘see’ rather than eyes. It was hard to tell what he’d react to, because he doesn’t stare really. It’s hard to tell if he’s focusing or not. His head is constantly moving, so there’s no prolonged looking in one direction. But small things would give it away, like Mikaere wasn’t really able to see you unless you were right next to him.

We did lots to help his vision – namely large black and white cards were up everywhere – in his crib, by his changing matt, in the buggy. I’d put “CVI” into the search box on youtube on an iPad and put it in his crib (I liked this one best). We’d hang black and white toys from a microphone stand to dangle above his head. We move objects with lights or bright colours slowly into his field of vision and across to the other side in the hope he’ll track. We even got referred to the local Vision Support team, who started working with Mikaere every two weeks.

I can’t say for sure any of that helped – for a long time it felt like we were doing the same things over and over with little to no progress. The problem is that we didn’t know what Mikaere could and couldn’t see. We knew from the eye test that there is nothing wrong with his eyes. We knew Mikaere could see some things, but what? We don’t know. If we don’t have a baseline, how do we know it’s improving? Do we keep going? Do we stop? Does it make any difference at all?

And then we had a period with little to no seizures, no illness and something shifted slightly. It wasn’t a sudden change, it was gradual thing, like noticing Mikaere turn his head if someone moved down the other end of the room. He might point his head at an object, turn away and then batt at the exact right position with his hand.

Our therapists (who had the benefit of distance) started commenting how much aware he seemed. He began doing things like opening his mouth in anticipation of food, or turning his head when he didn’t want to eat what we were offering. Turning his head much more. He’d cry and stop when we approached him. Small things.

We’re still not clear what he can see, and Mikaere doesn’t stare, or track the same way we do. He won’t look and reach at an object at the same time, but there is some visual mapping happening.

We still don’t know what he can or can’t see, but there’s a definite improvement, and that’s something.

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.

Aug 20
3

On rolling

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We’ve hit another milestone – Mikaere rolled over today. From his back onto his left side.

Mikaere ROLLED OVER! Onto HIS SIDE! BY HIMSELF!

I can’t even begin to explain our excitement. The first time I saw it I thought it was a fluke. He’s been very wriggly recently – a little tiny worm as he wriggles about the mat, but always on his back, with shuffling his hips from side to side to get around.

This is the first time we’ve seen him roll. Intentionally. With something we haven’t explicitly spent hours and hours teaching him. My baby can roll!!

It’s the small things, hey?

Aug 10
1

On having the best of friends

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Good friends of ours (possibly some of my favourite people ever) live overseas. They’ve loved on us from a far and loved on Mikaere when they’re in London. A few weeks ago they hosted a murder mystery fundraiser for #teamMikaere. You guys – I’m jealous it wasn’t here because it looked absolutely AMAZING!

Phe and Dom hosted dinner for 10 of their (incredibly generous) friends. They did a short intro about Mikaere and why they were fundraising and holding a murder mystery event in lieu of running marathons or walking cross country like some of the other epic efforts (which made me laugh – I love they did an eating/drinking event. Phe and I once tried to run together and both of us I think decided walking was more our preferred pace).

Set in 1967 the Champagne Murders was accompanied with a very terrible fake Austin Powers DVD random clues and scripted characters. Apparently there was a lot of heated debate while they picked apart the clues and pointed fingers at each other as the potential murderer (which I also love – as a big Mafia/Secret Hilter fan I love a good Kangaroo Court!). With a lot of food and free-flowing booze their very generous friends raised a phenomenal 3,000QAR, which is roughly £633!

Isn’t that one of the most amazing things you’ve ever heard? I’m continuously overwhelmed with how our village has come together, and still does – months on, to fundraise for us and love on our family. So a big giant THANK YOU to Phe and Dom. We love you guys more than you know.

Aug 08
1

On reusables vs disposables with tube feeds

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When we finally left the hospital and Sam and I were finally able to parent, one of the first things I did was switch to reusable nappies. We used baby genius freetimes and they are AMAZING. As convenient as disposables and easier to manage (mainly because I never had to leave the house for nappies, all I had to do was a load of laundry). Overall I felt pretty smug that we were doing great things for the environment and that our nappies weren’t ending up in a landfill.

Except that now we have the gtube, we’ve changed his feed a bit (high five for the blended diet) and increased his fluids as appropriate and woah buddy.

The intake outtake has been ridiculous. I can’t keep up, not with liners, not with anything. The nappies were leaking. Leaking doesn’t even seem like the appropriate word – it was like every half hour Kai was DRENCHED, requiring a bath and full outfit change, and washing whatever he was lying on. I can’t tell you how many times a day I was stripping the crib and washing the sheets. I got to be an expert in washing the car seat cover and I started putting incontinence pads down everywhere.

So we switched back to disposables. I hate myself for saying that, but we did. The all-in-ones weren’t cutting it and I didn’t want to spend a lot of money upfront of more reusables that may not suit. I’m sad I didn’t have the capacity to change the nappies every 15 minutes and the full outfit/bath/strip the crib/wash the car seat routine several times a day, but I just couldn’t.

Disposables, I don’t love them. Here’s the other thing, even now the disposables (and we’ve tried several different brands) don’t always hold up overnight. I’m considering going up a nappy size to help with the absorbency because wtf. Knowing that nappies are likely to be in our forever with Mikaere, it’s infuriating that my kid isn’t even 2 years old and with tube feeding we’re dealing with leaks all over the place. It’s even more heartbreaking that this isn’t a temporary measure – Mikaere is likely to be in nappies for his entire life – that’s A LOT of nappies in the landfill not breaking down. Le sigh. We’re currently using Naty’s. They’re apparently an eco disposable (though I’m aware this is because they are PRODUCED according to the most environmentally friendly production methods. This however has NOTHING to do with their landfill implications. Their website says parts of their nappies are biodegradable in appropriate conditions (if that’s not snake-y marketing speak then I don’t know what is). Truth is they still take forever (400+ years) to break down in a landfill.

It’s very blah. So – special needs tubie parents I want to hear your tips. What nappies are best? How are you managing with absorbency? How do I not add several nappies a day forever to the landfill while still not having to change and wash everything?

(Image throwback to baby Mikaere in our very first few days home…)

Aug 06
1

On drama with buttons

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Ahhhh. Fuck. I’ve talked before about how Mikaere’s button is in the perfect position for him to reach when his elbows are supported on the floor (so anytime he’s lying supine). He has pulled it out numerous times, and even worse – the balloon has burst and it’s fallen out.  Womp.

As a bit of a back history: this is what a button looks like. Essentially, there’s a feeding port with a balloon that holds it within Mikaere’s stomach. You deflate the balloon when you put it in, and once in you inflate the balloon to hold it in place. These buttons cost about £400 a pop and should last 5-6 months.

 

In the last 3 weeks Mikaere has had three (to the tune of £1200. W.T.F). I literally don’t understand why they’re not lasting.  When I was trying to explain to our nurse what was going on, it was very confusing. In the end I had to write up a breakdown just to get my head around it:

– 14th – Button got pulled out in the carseat fully inflated. (Button A). Went into A&E for a replacement, which we put in (Button B)
– 21st – Mikaere pulled out his button fully inflated (Button B). I put Button B back in.
– 22nd – Picked up a replacement button (Button C) for just in case
– 1st – Mikaere pulled out his button (Button B) fully inflated. I put Button C in.
– 3rd – Button C had a leak and fell out. I sterilised Button B and put it in.
– 3rd – Button B also had a leak and fell out. I sterilised Button A and put it in, and taped it so it couldn’t come out.

Just in case it was hard to follow:

Button A – Currently in. Inserted twice.
Button B – leaked. Inserted 3 times.
Button C – leaked. Inserted once.

I’m getting really good at putting the button back in, but YOU GUYS – it’s always a moment of panic. It’s so terrible. First it’s because someone notices that Kai’s onsie is wet, and there’s a wet spot on his onsie right over his belly button (which is a weird place for a onsie to be wet). Whoever is nearest will jank up the onsie to check, and sure enough, the button is out and vomit is leaking out of his stoma.

It’s a bit of a race to get something – anything – into the stoma to prevent it from closing. We currently use leftover NG tubes. We have so many and they’re thin and easy to get in and tape. The concern is that if the stoma closes then 1) we’re back to the NG for meds and feeds (boo!) and 2) he’d need surgery again to put another button in. Considering the huge risk of general anaesthetic and the emotional upheaval of the first round, I’m not keen.

Once we have an ng in the stoma we can relax for a moment and figure out next steps. Sometimes that’s going into A&E if we don’t have a replacement button on hand. Sometimes it’s sterilising the existing button, letting it cool and putting that one back in. If we do have an unopened, sterile replacement we’ll usually use that.

But oh, putting it back in. It’s not as bad as the NG, but it’s not fun. Because typically Mikaere pulls out the button fully inflated, his stoma is sore and a bit tender. When I attempt to push a new one back in (deflated, obvs), Mikaere screams and clenches his abdominal muscles, essentially stopping me from pushing it through. I have to wait until he takes a breath in – when he takes a breath in his lungs expand and his abdominal muscles relax for a millisecond. Listening to your baby scream because of something you’re doing is horrid. It’s heartbreaking and I hate it. But it’s necessary, so necessary, so on we go. Eventually it’ll be in and we aspirate stomach contents up to make sure it’s in the right place (testing with a PH strip).

Having to do this 5 times in the past three weeks has definitely upped the daily stress factor of our lives. The most current button is physically taped to his body, so he’d need to get through several layers of hyperfix to the button out. We don’t have a spare at the minute, so I’m really really hoping he doesn’t pull it out. I don’t fancy a trip to A&E for another one.

We’ll see. Hopefully things will get better soon. Fingers crossed this one will stay in longer than a few days!

Aug 03
0

On more vomits and our magic osteos

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After my victorious post about Mikaere putting on weight… I’ve had to retract all that joy and positive forward momentum. As of this morning, Mikaere is 10.37kg. Which is to say, he’s the same weight he was three months ago. Except that now he’s longer, and he’s lost all of his beautiful baby chubb. You wouldn’t know it to look at him – he looks so well. Like a happy little boy. Except that most people don’t see him without his clothes on. You can’t see his ribcage or the way his little vertebrae stick out.  Now, just to clarify, he is underweight, but he’s not in emergency, dire situations. We’re sitting at about the 20th percentile.

Even more relevant, is that we know *why* he’s not putting on weight, and it’s because he can’t keep food down. Oh the vomiting. The vooooommmiting. It’s everywhere, all the time.

Here’s the thing. Mikaere has a not-cold. He’s not really ill, he doesn’t have a chest cold or a temperature or a touch. What he has are secretions. From teething, maybe? From life? And every time he can’t handle a secretion he vomits. His body and his stomach is so sensitive. I spent a long time talking to our osteo about the structure of the stomach.

I’ve said it before and I’ll say it again – here is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophageal reflux (aka, vomiting because of the gastro – source) so for everyone due to get a gastro – you’ve been warned. Asked for a hitch with a low curvature and make your surgeon agree.

I’m positive that because Mikaere’s stomach has been hitched high to his abdominal wall, this has pulled his stomach up at an unnatural angle, changing the way food sits in his belly and puts pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in. The outcome of this is that he’s a trigger-happy projectile vomiter now. All the time, everywhere. In the buggy, the car seat, the crib. Sitting up, or down or side lying. Moving, not moving. On the blended diet, formula or dioralyte.

I thought we were getting somewhere with reducing the frequency of his feeds and the rate at which we feed him, but now we’re going even slower, because fuck. The vomiting. I thought we were on the up but I was wrong. Womp.

Anyway, like I said, we see an Osteopath every week thanks to the amazing charity Osteopathic Centre For Children. Side note: Osteo is essentially concerned with the mechanical arrangements/movements in the body, particularly in terms of alignment. They do a lot of soft tissues massage and joint manipulation, though to be honest, sometimes it literally just looks like they lay their hands on Mikaere and close their eyes. We see the same therapist every week and every visit in the few weeks has included a projectile vomit. It’s so so horrid.

But this week, this week Stuart was in the clinic. He’s the director of the Foundation for Paediatric Osteopathy and is essentially one of UKs leading osteopaths. Stuart is essentially magic. He came to see Mikaere and we talked about the vomiting. Leading an additional two osteos, they did their hand laying/eyes closed trick and talked about medical terms (the sacrum, the vagus nerve etc. They later translated to say Mikaere’s insides were a bit twisted around the hitch, which caused his body to work a bit like a spring. They were trying to untwist all the things).

I’m hopeful, as always. I wasn’t convinced they were going to stop the vomiting, but Mikaere enjoys osteo, he always relaxes and they’re not doing any harm.

Oh, silly disbeliever me. After his appointment, we went FOUR DAYS without a vomit.  Considering we had normalised at to 2-3 vomits a day, four days of not changing sheets or cleaning carpets or multiple baths – what a relief. You can be sure I showed up the next week with a ‘more please’.

After every visit, we’re seeing longer and longer vomit free times. I don’t fully understand it, but I’m grateful. Mikaere is not yet back up to where he was, weight wise, but if he can keep food down it’ll start, right?

Magic Osteo’s. Definitely recommend.

Aug 01
1

On small wins

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Mikaere’s on two antiepileptics and a supplement to help with his seizures: Zonisamide, Phenobarbital and Omega 3 (with all of it’s fantastic DHA seizure support capabilities). Now, it turns out that phenobarbital is one of the most frequent drugs used to treat neonatal seizures, and considering Mikaere is palliative it seemed like a good choice when nothing else was working.
 
But here’s the thing, long-term use of Phenobarbital has enough studies to suggest it has a terrible effect on a developing nervous system, it has a detrimental developmental effect too (with developmental quotient declines (in both cognitive and motor skill) which are thought to reflect a slowed neurological growth rate) and causes an increase in the probability of a cerebral palsy outcome.
 
Whats more, side effects include a decreased level on consciousness (it’s essentially a sedative) and it’s addictive, causing withdrawal symptoms when weaning. Aaaaand it would make Mikaere vomit. If it wasn’t diluted and given really really slowly he would vomit immediately.
 
Also, it turns out phenobarbital is used in the lethal injection of death row inmates and also prescribed to terminally ill patients to allow them to end their life through physician-assisted suicide. Always nice to know we’ve been giving this drug to our baby twice a day for last 14 months.
 
A good 9 months ago now Mikaere’s seizures started becoming a bit more, dare I say it, under control? Mikaere started having a handful of seizure free days. At first, it was sporadic, one day here, one day there. It was amazing, so amazing to see. The fewer seizures he had, the more gains he was making. Eventually, he worked himself up to two or three day stretches. I was ecstatic, to say the least.
 
It was at this point we discussed weaning with our palliative care team. There wasn’t much harm, they said. As long as we went slowly. If there was an increase in seizures we could put the dose up, no problem. So we started a very very slow wean. Every three or four weeks, we’d reduce the dose by 2mg (which is about 0.2ml – a tiny tiny amount). We’d wait, and watch. We already track Mikaere’s seizures and I’d hold my breath waiting to see if there would be more seizures. Sometimes there would be if he had a cold or was having a tough time. Sometimes you wouldn’t have noticed the dose had dropped.
 
It felt tricky, weaning. We eventually got to a sub-therapeutic dose. We high fived that day. And today? Today, after months and months and months of tiny, incremental weans – we’ve managed to get Mikaere off phenobarbital.
 
It’s been amazing. He’s been more awake and aware, making more developmental gains. I have seen an increase in seizures if the Omega 3 is a bit old (and has oxidised) or his Zonisamide dose is later than it should be, but generally, as long as we’re on the ball he’s a happy little guy who is still having some seizure days.
 
I’m stoked to have Mikaere off one of the medications. Phenobarbital is still on our list of emergency meds, but I’m delighted we’re no longer giving it on a twice-daily basis.
 
Celebrating small wins, woohoo!