Hello 2020

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Another New Year, here we are! We did it! Another year! It’s a tricky one, New Years. I feel like I want to pause, and I’m not really ready to roll forward into 2020.

Truth is – I’m scared about what this year will hold. Will 2020 be the year Mikaere dies? Will it be fraught with hospital admissions, and seizures and pain? Will it be the year we see a slow deterioration? Will it be the year I peer into his crib after the sat’s monitor has gone off, and he’s passed?

I’m in that space, the nervous and anxious anticipation of what I’ve been so brutally primed for. This fear, it holds me tight.  I’m in a holding pattern, really.  Waiting. It doesn’t matter how much I put on a brave face, or how grateful I am or how much I live in the present. One day my son will die and there is literally nothing I can do to stop it (bar fundraising, which feels like crossing my fingers and hoping – but I’m holding on to that hope, gripping it tightly in my hot little hands, scared to let go, hoping for a miracle).

Looking  back at 2019:

Mikaere celebrated his third birthday this year, for which we’re grateful. His head holding has really come along, and he’s as cheeky as ever. He loves the drums and singing and company. Bubbles and banana yoghurt are wins, spaghetti bolognese and tummy time he does not love. He is very very chatty when happy. Mikaere is very wriggly and the king of 2 minute power naps. We also took Mikaere Ice Skating and he stayed a whole week on respite at hospice with his Grandparents.

Therapy still remains a huge part of his day to day, with 11 different regular sessions (Physio, OT, ABM, Yoga, Hydrotherapy/Splash, Vision, SALT, Portage Play Therapy, Osteo) and weekly visits to Small Steps + the Vision Sensory Playgroup. We hope to add hippotherapy in the new year!

He’s had 556 Seizures (and managed a whole 8 days seizure free!!), 228 vomits + has night nurses 3-4 nights a week. We’ve managed a whole year with NO hospital admissions (woohoo!) + only ONE A&E visit! He’s had over 400 therapy/medical appointments across 8 different centres with a combined team of 30 different professionals.

Fundraising wise we’ve had a great year. We raised over £40k for NKH Research in 2019 – bringing our all time total up to over £143k – a phenomenal amount that gives us hope. Thank you to everyone who donated, organised and attended our events and fundraisers. We love you!

It’s huge to know how many people have run marathons (or 12kms!) and cycled, and drank wine or painted art or had a drink or hosted a games night or bake sale or or or (I could go on).

Looking forward to 2020:

If I’m being truly hopeful, what I’d like is for Mikaere to be in a clinical trial for NKH Gene Replacement Therapy (please universe, line up all the dots and fast track it through. Please make it happen). And while that is what my heart is pleading for, a future with my son where he doesn’t suffer, I’m realistic enough to know that instead, I hope for happiness for Mikaere. For a year with less seizures, more development, and more joy. More happy smiles, more cuddles and more belly laughs. That he’ll become more mobile, and ever so slightly more independent.

We’ll see. Please be kind to us, 2020.

Merry Christmas!

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As we settle in for Christmas Eve, we want to wish you a safe and calm festive season.

We know that moments of joy are precious and fleeting, and that Christmas isn’t always the jolly affair our highlight reels make them out to be.

For our friends who are on the ward, in ITU, and for those that are facing another milestone holiday with a gap in their hearts, for those that are alone, and for those whose families are on the other side of the world: we’re with you. We send love and strength and grace for managing all that tomorrow brings.
We love you. Merry Christmas x

On falling out of the red chair

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Mikaere has a red tumble form that we use a million times a day. It’s portable, he fits in it and it’s convenient for eating (as he needs to up upright while on feeds). He can wriggle and kick and bat things in it, he’s not strapped down, he’s not confined.

Except maybe he SHOULD be. Kai has learnt how to fall out of his chair. It’s a very slow motion kind if thing, it takes several minutes for him to topple over the side, moving his arms and shifting his weight until his top half is heavier than his bottom half holding him in the seat.

Sure enough, he’ll go over the side (we’ve only let him do it a handful of times, usually you can see it coming a mile off and reposition). The first time he screamed. The second time he was a bit bewildered. And third was definitely intentional and had a big grin.

It’s hilarious. And I’m glad he’s making choices for himself about where he wants to be.

Update: We’ve had to strap him in now, as it’s getting a bit dangerous. The chair is no longer a safe space to be unstrapped!

On Turning Two

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Recently our sweet boy turned two. TWO! Can you believe it? We welcomed the day cautiously, another birthday made. This feels different to his previous birthday – there wasn’t any fear. We were so fearful at his first birthday, that it was the only one he was going to have. That it was the only birthday we were going to celebrate (which is why we went big. Big party. Lots of people. Ridiculous cake and food and decorations and everything).

This year? This year it was quiet. A small family lunch with balloons and bunting and cake. Nothing too fancy. Here’s the thing though, Kaikai is so loved. He got a bucket load of cards (thank you all for your kindess in remembering!) and some sweet gifts from friends. We’re so grateful at the kindness others have shown. So grateful. So grateful he’s still with us, despite our doctors predictions. So grateful that he was well on his birthday. So grateful for his little smiles.

Grateful, and forever bittersweet.  But he’s well loved, and he’s pretty happy and content and right now that’s all we can ask for.

Happy birthday little man. We love you more than anything x

On standing

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We’ve started a new exercise at our Monday Morning playgroup – standing. I don’t mean the standing that happens in the stander but proper standing, on his legs – not strapped in. It takes two people to support him and he’s always leaning against something (because head and core and legs is too much to think in one go) but you GUYS!

His feet are on the floor! His legs are straight (either with the help of us or gaiters) and he’s upright!! I’m glad this is a thing we’re working on. It feels like a step forwards. Its delightful to see how tall (!) Mikaere is, and it’s not hard to take that leap of imagination and think on what things could have been like if (there’s always that if and it’s a dangerous path to spend too much time on, but I let myself daydream for a moment or two).

I don’t know if we’ll ever get to unsupported standing, Mikaere needs a lot of encouragement (read: hands on his knees or leg gaiters and lots of cheering and big fusses) to straighten his legs. We currently have a floor baby – that’s his happy place, lying down on the floor. Where he can kick and wriggle and have some movement – the floor is where he does it. We always set up a safe space for him to wriggle, lugging about mats and baby blankets for him to lie on.

The idea that the world might be more accessible to an upright Mikaere, that standing is one of the (many) requirements of walking… standing is one of those gateway milestones for the hopes of a special needs Mama, obviously.

He’s not standing unsupported by any way, shape or form, but for a five minutes on a Monday morning Mikaere stands outside his standing frame. He’s standing, weight moving through his hips and legs and little wriggly feet. I’ll take it, absolutely.

On rolling

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


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?

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!

On the head holding

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I’m about to share a thing.  Before I do, before I share – I want you to understand that these two photos were taken in The Moment. You know what I’m talking about, right? How in The Moment everything is good and perfect and everything looks positive and rosy. I want to share with you all the positive and rosy things, because I always want to delight in these beautiful milestones.  But I want you to understand that either side of The Moment did not look like this, and that The Moment? The Moment was fleeting.

So, for a few seconds, during physio, Mikaere held his head up.

For a few seconds, he held his head up all by himself. He was able to keep his head in midline AND look to one side.

There was a moment, a beautiful beautiful moment where Mikaere smashed out another milestone, because for those few seconds, my son could hold up his own head.

This one is bittersweet, because a neuro-typical baby learns to hold their head at around the 2-3 month mark… Kai has a full year plus some on that. But you know what? Dr Doom and Gloom told us we’d never get here. That we’d never see this – my sweet boy holding up his own head.

I live for these days, the ones that contain The Moment. Today was a good day.

Side note: Not shown: the moment Kai pulled out his ng tube just before physio started. Also not shown: the screaming fit that happened at the end of physio that caused a giant vomit. Our days are always up and down.