#teammikaere

We’re currently back in a good time. We’ve had a few seizure free days, and Kai has been very vocal, very awake and aware and quite content. Apart from the teeth that are coming through – we’re in a good time. I’m just going to take a moment and say woah buddy. The number of good periods we’ve had can be counted on one hand. So to be in one, it blows my mind a little. 

However, the flipside with good times is that we haven’t had many of them, and I’m suspicious. See, I can manage the bad times. I know how to pull up my big girl pants  and do whatever it is that we need to get Kai sorted. I’m good at the doing. I’m comfortable with managing the resources and talking to our medical team and organising our massive calendar of therapists. 

This quietly waiting for the next dip, the next drama, the next thing… it’s tense. It makes it difficult to enjoy the good times, because I’m constantly watching out for something… anything. For a stretch that rolls into a seizure. For less awake time than usual. For pain grizzles instead of regular just because grizzles. I’m watching, and waiting, and I don’t trust for a moment that this good moment will be everlasting. NKH isn’t that kind to us. 

In saying that, we’re really grateful for this little patch of stable and happy. Things seem more manageable and everyone is sleeping and suddenly all of the basics of life (showering! socialising! shopping! Visiting a cafe for a coffee! Taking long walks!) seem possible, even achievable. We don’t often get stable and happy, so I’m trying my best to soak it up and enjoy it.

Fingers crossed it lasts.

Baby gear these days is ridiculously adorable and fairly affordable. That’s such a dangerous combination –  it’s difficult to resist ‘just popping in for a look’ as you go by H&M kids, or the baby section of M&S. Kai’s Grandma happened by some very very adorable hats, and before we knew it, Kai had the first of his hat collection.

Considering this amazing weather London’s been having, it’s a pretty well timed gift. We’re well pleased! 

My BFF lives in New Zealand. New Zealand is horrifically far away, a good 26 hours across two flights far away. I HATE how far away it is, when so many of my nearest and dearest live there (honestly, when is teleportation happening?!). Because we both have young ones, travelling so far seemed impossible. Except that Liz was sent on a work trip to Tel Aviv and Munich, which is practically next door compared to how far away New Zealand is.

And she very graciously stole a weekend to fly across to London to meet us. 

Oh my days. OH MY DAYS! I had no idea how much I’d missed her. How beautiful having someone who has known you forever, who is so wonderfully on the same wave length as you, who was so wonderfully in the SAME PLACE is. It was amazing. It was beyond amazing. Just small things, like doing the 6am feed, and Liz (being awake with jet lag) coming in to hang with us, while she skyped her little family back in NZ (honestly, I’m in love with her wee one, he’s beautiful). I’ve missed her. I miss her husband (hi Rob!) and I’m sad I haven’t had the opportunity to love on her little guy yet.

But having her here was THE BEST. Watching her love on Kai, singing Maori songs with us (because she knows the words. SHE KNOWS THE WORDS – because she’s Maori too! Sam tries, but he’s very English and not at all Maori), playing peek a boo with Kai and just – being around. Having your best friend around… it was so good. It was the best. 

I was so stoked she came to meet us, and absolutely gutted when she had to leave again.

One day, hopefully New Zealand won’t feel so far away. 

We’re so lucky to have so many wonderful people in our corner. Penny + Tony, friends of Kai’s grandparents, parents of Sam’s school friend threw Kai a BBQ.

I can’t even begin to explain what an amazing night it was for us. There’s something about having so many people love on your baby, to say they hope for the best, and to follow up with donations is just… it’s just overwhelming. And generous. And amazing. 

There was a very loud raffle, where almost everyone bought something to go in. It was fab – they sold something close to 500 raffle tickets. Our crew must have bought a bucketload because we came home with an epic amount of prizes. Some of the prizes were so impressive – a chocolate pizza from the Chocolate Deli was just phenomenal. There was fancy wine, a giant tube of haribo, bunting (from Peanut & Jam!). Kai’s grandad was especially happy with his new set of screwdrivers. 

There was a cake auction, with two beautiful, beautiful cakes (thank you Jan!) and Penny, our host, made this ginormous beast of a chocolate cake. Guesses taken for the closest weight (it came in at a whopping 5kg) and it was *delicious*. 

Kai’s Grandma sold some of her watercolours, I sold some of my cards. There was also a donation tin, as people came in.

And then there was the meat… Tony is an avid barbecue-r. Avid. The pork joint was bigger than Kai (at a massive 12kg) when it hit the BBQ. There was sausages, chicken, beef, pork and just… a lot of deliciousness in an evening. 

When Kai had had enough, we called it and packed up ready to leave. We got a text later that evening once the donations had been counted up and oh my days. OH MY DAYS. We made £1127.35 in one evening.

I… just, I can’t even begin to express how taken aback we were, how grateful we were by the generosity of people that didn’t even know us. Who didn’t know our story. Who were there because they knew Penny and Tony. 

And to the people that did know us, we’re so so lucky to be surrounded by the people we are. So lucky that there are so many on #teammikaere. So incredibly lucky. 

What an incredibly, amazing night. We’re so grateful.  Take that NKH. Research is happening, we’re moving it forward. After a night like this one, it’s impossible not to have hope. Hope that we’re going to fund a cure, that we’ll get a future with Kai. 

Because Kai doesn’t focus on objects (oh hey cortical vision blindness) a lot of the age appropriate toys available are inappropriate for Kai.

The best ones, we’ve discovered are ones that aren’t really toys at all. Ones that make sound – like the crinkly space blanket. They’re typically used by marathon runners at the end of a marathon, or by emergency services for people in shock. Its like a giant piece of tin foil that doesn’t tear. It’s well good, and Kai loves it. It crinkles when he touches it – fine motor movement is not his forte so it’s usually a big sweeping arm movement, or a vigorous kick. Bonus is that a massive sheet of the stuff is available on amazon for a whopping £1.45. 

The other is a carousel of hanging bells, good for swiping with a nice big arm movement, making a satisfying crashing of bells. We’ve even noticed that when’s Kai’s had enough, he’ll reach out and wait for a bell to settle in his palm before closing his fingers around it. Intentional grasping hey, our little guy is coming on in leaps and bounds!! 

It really is the little things for us right now. Kai hasn’t hit a lot of the regular milestones (head holding at 8 months still isn’t a thing), so when we find something that brings Kai such obvious joy, or he picks up a skill we hadn’t noticed before, it’s huge for us. I spoke before about how our little guy goes at his own path, on his own little NKH path, and I think this is another example of that. 

Still, at this point, we’re just grateful we still have a path to be on. 

It took six months for me to leave Kai with sam and go out with friends by myself. It was fun getting dressed up and I’d missed that feeling of anticipation. However, the actual leaving part was rubbish. I very almost called to cancel and could have happily spent this evening snuggling with Kai.

I didn’t though. I kissed him and sam goodbye a million times and walked out the door by myself. It was odd, to leave him behind.

Once out I did enjoy myself – I was delighted to catch up with my friend, and we did dinner and a show and cocktails (high five for the honeysuckle fizz. Nothing like a little bit of tequila to relax you. We made the opening night of Dirty Bones in soho, it was well good).

Here’s the thing though, I found it difficult not to constantly talk about Kai. He’s has my complete and utter focus, he’s the centre of my world right now. I’ve become one of those people who talk about their child all the time. I didn’t understand it before, but now I get it. It’s because I don’t have a life outside my baby really. I’m not adventuring, I don’t work in an office… everything I do is connected to Kai: how he is, the research I’ve read, the fundraising I’m trying to figure out… I can talk about Sam or Kai. My world has condensed, its shrunk to my two beautiful boys.

It makes me a rubbish conversationalist for people that don’t love those two as much as I do.

I suspect that the more I go out, the more I do outside Kai the more varied my conversation will become. I’m not sure I want that though. I’m still stuck in the ‘everyday is precious’ mentality. We don’t know how long we have, and I don’t want to regret not being with him. We’ve been trying to not live the diagnosis, and live through it instead… but you know what? While that’s awesome for enabling us to go out with Kai, it’s difficult to strike an emotional balance.

I’m still a new Mum. I feel guilty when I’m not there with him.

I guess we’ll figure it out. Till then, I’m hoping people will have patience with my deteriorating conversational skills.

As Kai was being a bit more Kai like, we took Him on a road trip out to meet his Great Grandfather. Oh my days, what an absolute delight. I adore his Great-Grandad.  He’s so clever, and he has on multiple occasions rather fruitlessly attempted to teach me to play piano (there a small baby grand in his living room. It’s fab. I love the idea of having such a beautiful instrument so wonderfully accessible, instead of tucked away!)

To see him love on Kai was beautiful. Kai’s lucky to have two Great-Grandparents to love on him, and it’s so delightful to see four generations together

Anyway, I’m all over the place with my feelings. It was the longest we’d ever driven with Kai, a good few hours. It was an amazing weekend of piano playing and cuddles and furious website building (I built a site for NKH fundraising while there were extra arms to mind Kai).

Kai’s Great Aunt was also there, and his second cousins. It was one lovely family trip. There’s something wonderful about having multiple generations all together. I’m so pleased that Kai has such a fantastic bunch of people around him, really.

Such a great weekend. Fingers crossed for more weekends like this one. 

Like I said before… being at the hospice makes it a bit easier to do the ‘normal’ things. One of the things we did was to walk down to the canal and feed the ducks. Usually, such a jaunt would require the organisation similar to a military operation. At Hospice, our nurse bundled up our emergency meds, we waited for a window between feeds and off we went, on a little jaunt down to the canal. 

It was a bit of a walk, down a dirt track, under a bridge, down a gravel road. It was fine for us. Kai is still small enough to fit into his pram (which is a behemoth three wheel pram with suspension and ‘sport’ mode) so we had no problem going off road. Kai slept through all the bumps like a champ. I was able to push with one hand while I took photos with my phone. 

The wheelchairs that accompanied us had no such luck, and I admire the strength and determination of the nurses that pushed them, and the stoicism with which their occupants endured the bumpy ride.

We did eventually make it to the canal, and from there we walked along until the bend, where we found two little ducks. We were all gifted our share of bread (and I’ve since learnt that you’re not meant to feed ducks bread, as it’s bad for their digestion, like too much candy) and some of us threw it to the ducks, and some threw it on the path, each to their own. 

It was nice to get out, and be in the sun and outside. I forget how important it is to get outside. It’s so easy at home just to stay in. Between the therapy/nurse visits and the feeds and meds and managing the flat – the day just goes so quickly. If we don’t have something to get us to go out, it’s hard to find the momentum to get going. 

Honestly, I’m grateful for hospice for the reminder.

So… we’re back at hospice on a symptom stay. Kai deteriorated, and we got into zero awake time and frequent seizures. Because we had so much advice, I went with what I thought was best, which was to not tinker with his anti-epileptics and to increase the NKH meds. It’s been a while, and I’m pretty sure his glycine is through the roof (spoiler: it totally was. Two weeks later once the bloods were back I was proven right – his glycine was at a whopping 600, when he’s usually around 250 – 300). 

It’s nice to be at hospice at times like these – we’re taken care of. We’re around people who aren’t sleep deprived, who know Kai. Who are capable with all the things, with the seizures and the meds and the comforting. He’s in a good hands, when we’re at hospice.

It also means that we get a chance to do family fun things. Like hang out in the sensory room, go swimming or introduce Kai to the ball pit in soft play. It makes a difference hey.

Sure enough, after a few days Kai gradually became more active and alert, and the seizure count went down and we were able to go home again. High five us. 

I’m so grateful we have the support we do in hospice. Hospice is a kajillion times better than hospital. I don’t know what we’d do without them.  

When people ask how Kai is, I typically respond ‘up and down’. On an up, he has good awake times, and is chatty, moving his limbs with intention and determination. And the last little while has been an up. I’m very aware of just how up he is. He’s delightful. We’ve had only a handful of seizures, and we’re able to go about our day with some normality.

This week… this week we’re sliding into a down. Both Sam and I can see it coming, with fewer and fewer awake periods. I brush it off as a growth spurt, or teething, or that his body is recovering from something and needs the extra rest… I’m hoping it, willing it to be one of those things.

Except then the seizures start up. Again. Horrible horrible seizures. And then Kai’s awake time was lasting minutes. And then he stopping taking the bottle. We’re in a down, and I’m devastated. It was only a few weeks ago that we shook off the last lot and managed a short period of stability.

And I do what I always do, which is badger our nurses and our metabolic consultant into reviewing the medication doses against his latest weight. I ask for bloods to be taken (although that’s a whole other battle. It’s turned out that the lab has stopped processing our blood samples because they come too frequently (every few weeks) for the lab to handle. So they just don’t do them. Furious doesn’t even cover it).

We talk to our palliative care consultant who argue for weaning off an anti-epileptic, and our neurologist argues for weaning off another. The parents Facebook group has all sorts of comfort and other advice for things we can try.

I’m torn at all the options and trying to understand where to even start. No one is looking at the whole, holistic picture except me, and I’m no medical professional. I feel like I’m trying to hold back a tidal wave with my palms. And as I see Kai sink lower and lower into the world of unconscious seizures I struggle. Everything slows down a bit and gets heavy. I recognise the signs… I stop making the bed and worry less about going out and about without make up on. I fight with Sam, and stop going out for walks, hunkering down while I try figure this out. I graph the number of seizures against his meds and his weight and his last (super outdated because the stupid lab is slow at processing bloods) glycine level.

I’m not sure how to manage myself, exactly.

I used to bury myself in research, and then it was fundraising and now… I look to distraction because I just… I don’t know how to keep managing these downs. They keep coming. It’s never ending.

I wonder constantly if this is the beginning of the end for Kai. Dreading the moment we have to give more and more rescue medication. Or whether we’ll work out what it is, or whether we won’t and he’ll come around anyway. The fear. It never leaves.

And when people ask how Kai is I can’t honestly bear to tell them how down we are. I don’t want to see the pity, or the sadness everyone has reflected back at me. We keep on keeping on because there is nothing else to do, because we love Kai so much. It’s just, that the ups are so fleeting, and the downs are so deep, and no one really knows what’s going on inside Kai’s little body. No one really knows how to help him.

When we were in the NICU, we would say Faith and Fortitude to ourselves, willing just to get through to the next day. Now I say it, and I’m willing us to get through the next crisis, the next week, the next month, the next year. After the uplifting hope of meeting Nick Greene and how the research is moving forward, I can’t help but wonder if it’ll be too late for Kai.

These down thoughts… they are very down. 

So, faith and Fortitude. Onwards. Hopefully this down won’t be a long one.