On a new kind of job

I talk a lot about grief, and grieving. I often feel like I'm being blindsided by something else I need to let go of.

Today I realised that as long as Kai is with us, it's unlikely I'll ever work again. Intellectually, I made the decision to close my company months ago. Today the emotion caught up and I struggle.

I was proud of what I did. I worked on apps that millions used. I worked behind the scenes on some big brands, making parts of the digital world better. Some of the work I did was average, I'll admit. Timelines and limited resources and developer constraints often get in the way of excellence and I did the best I could when faced with those challenges. But some of the work I did was fucking brilliant.

It occurs to me that my time at being fucking brilliant in my career is now over. I won't ever be able to demand the pretty penny I once did. I won't ever be creating like I was, mingling in the high flyer world of agencies and amazing designers and interesting developers. The digital world moves on so quickly, new trends, new research, new tech and best practices.

Now, when I throw up a simple website or make some pretty cards, that's it. I feel like I've fallen from design grace and have been left behind.

I love Kai, and will forever put his needs before mine, but leaving my job and putting to bed all the work I was doing is a bitter pill to swallow.

Part of it I think is letting go of the glory. Designing for big brands can be impressive. Being 'just' a special needs Mum has its own stigma and stereotype, and when I'm stuck in the mundane same same of our days... it's hard not to feel down about it.

I feel all the feels. I didn't expect to, but there we go.

Edit: Yes, I can still design things at home in my spare time if I wanted to. I have an option to do that and I'm trying. I'm working with two phenomenal developers but like I said, Kai comes first. Finding time to work in Kai's day is like trying to capture a sunbeam between your finger tips. No good design work ever happens in distracted 10 minute intervals.

On sunny days

The more I hang out with our NCT kids, the less dagger like their developmental progression feels. It's hard not to delight in this little group of 6 month olds. They're all smiles and chubby cheeks and what else can they fit in their mouths?

We went to Battersea the other day, and oh my days, it was nice to be outside. We'd spent the morning at the hospital at some routine appointments, and meeting the researchers and I was desperate for time with non-medical people.

Four of us made it, and one of the other mothers asked if I'd like a cuddle with her wee little one. Oh my days, as much as it's difficult to see kai not developing typically, this little sweet thing was such a delight! She was so strong, and determined and focused. She was so beautiful, and holding her was such a joy. I felt like I got a small glimpse into what it might have been (though I'm careful not to linger in the world of what ifs too long).

It was just an amazing afternoon. Fab company, the sun was out. Kai had pulled out his ng tube and because no feed was due I left it. Which means for the first time while we were out and about kai had bare cheeks. We walked the 40 minute meander home, and it was beautiful.

It's amazing how something as small as a sunny day, a park and wonderful company can completely change your day around.

On Meeting Joe, from Josephs Goal

We were lucky enough to meet Emma and Joe (the famous Joe!) from Joseph’s Goal, the charity we support. It was after rushing about meeting Van Hove. They were also in London to meet Van Hove, and listen in on the research update. We went to them, in the lobby of a hotel near Regents Park.

Oh my days, I find such comfort in the company of parents who get it. Who understand, who hold the same hopes and fears and dreams for our kids. Who understand the day to day complications and just how demanding it all is. To spend some time with people who don’t shy away, who aren’t awkward and who just get it.

Joe, oh my days, Joe is amazing. He’s so long and lean, with the bluest eyes you ever did see. Joe is quite disabled, as I think Kai is likely to be. Emma and I were talking about our fears and hopes and one of the things she mentioned was about how different all our NKH kids are, how their mutations express their abilities in different ways, and how difficult it is to imagine that life our for babies. Joe is disabled, but oh my days, he’s beautiful. He’s able to vocalise, and it’s clear when he’s struggling and when he’s enjoying himself. Sitting with his Dad Paul, he was so relaxed, and happy. It was obvious to see.

I don’t shy away from these kids. I think we’re lucky that we spent so much time in hospice and were exposed to see many less able children, from something like autism to children with tracheostomies to children much more disabled than lovely Joe. And I have to say, Joe is eight years old - and just, I’m scared to hope for that long with Kai. We were told weeks, and then months and Kai is still trucking along. Our next milestone is a year. We're six months in, and a year feels like too short a time. We sit between an awkward place of fear, being told that any ‘acute event’ could rob us of Kai, between trying to make the most of every single moment and trying to live our lives. It’s tense, constantly waiting, feeling like every moment is precious. I’m not really able to settle when I feel like every day we’re lucky to have Kai with us. 

To hope for years…. I’m scared to hope that we’ll get that long with Kai. Could we be that lucky? Eight amazing years, and Joe is still going like a trooper. 

We also talked about all sorts, what its like to run the charity, what the researchers are doing, the upcoming conference in August, how tricky it is to fundraise, how to trust other people with our children.  We also talked about having other children, and the fear of having another NKH child, the split between neuro typical children and our NKH kids, how to manage and teach through the oddities of strangers attitudes towards our kids. 

There’s just so much to navigate with a special needs kid, there’s so much happening with the NKH community and the researchers. 

Honestly, I wish we lived closer to everyone - meeting Emma, Paul and Joe, back when we met Kirsty, Jon and Alex, its so comforting to be in the company of people who get it. We spent a good few hours just chatting to Emma, Paul and Joe, and oh, I wish we could have spent longer. 

Hopefully we’ll see them again later in the year. It makes such a difference you know, to find your tribe. Such a good day.

On meeting Van Hove and the current research

I don't know where to start. Last week I got wind that Dr Van Hove - an NKH researcher who has spent the last ten years looking at NKH, who has seen a number for NKH children, whose work has laid the foundation so other NKH researchers aren't starting from scratch - was in London on a three day whirlwind visit.

I found out the day he landed, but with a frenzied amount of emailing Dr Van Hove graciously carved out half an hour of his time on his final day for us.

This felt momentous - I have spent the last six months on a crash course into the world of metabolic biochemistry and genetics. My knowledge is rough, but I have read an inordinate number of research papers by Van Hove.

On the day I was nervous. Excited. I wasn't quite sure what I was expecting, but I had a long list of questions and was hopeful about learning a bit more from someone who would know. Finally! Someone who had answers!

Van Hove is a very softly spoken, genuine,  and very very clever man. A man of science, I'd say. He looked Kai over, and was very polite and he listened to my questions.

Well, my long list was a complete sham. I'd gone in with the wrong approach. I was asking questions like 'would x help Kai's brain development' or 'would x help the seizures'. I was asking because I couldn't find anything myself. I was asking because I was hoping finally, someone would be able to tell me.

I was a bit of a fool. On my very first question Van Hove very gently, and very kindly reminded that there was very little evidence for how things work with NKH. The more we talked, the more clear it became - there are a lot of good hypothesis. But there is very little evidence, and there is very little evidence because there is very little research. There is very little research, because there is very little funding.

I, just, I can't even begin to explain how deflated I was. I had the time with the person who has spent over ten years looking at NKH, probably the closest to an expert as I could get, and still... I was relearning what I already knew. NKH is so rare, we don't have millions funnelling into research. Our experts eek it out on grants and what small amounts families can provide. There is no evidence, because there is not enough research.

I gave up my list at that point. Van Hove did have a lot of interesting things to say, lots of new to me things, about growth and formation. About the research he's doing, about chaperone therapy and his hopes for the future.

I won't go into detail, because his current research is currently unpublished, but I'm hopeful. It was such a privilege to spend time with him. I have hope in his research. I have hope that the foundation learning he is doing will propel other researchers forward towards a cure. I have hope that he will find the right compound, for the right protein, for the right mutation. I have hope in him, because without him Kai, Sam and I have a very bleak future ahead.

Again, we place our trust in the research. We fundraise. We hope. There's nothing else we can do.

On finding things on a hard day

When we’re having a hard day, sometimes it’s just a small thing that will shake us out of it. Last week we were having a hard day - Kai was grizzly and having seizures, and at 3pm I was still in my pjs, the flat was a bomb site and I couldn’t get my wits about me. 

So, I said fuck it. I kicked a part of the couch clear of debris and Kai and I relaxed down into a mini nest. And then I painted our toes a delightful shade of pink.

Sometimes it’s the small things that make you feel better.

On special needs friendships

I’m only just beginning to discover how lonely it is being a special needs Mum. And I know, I know you’re all here, and we’re not alone through this. So many of my Mama social groups have typical kids, and I love them. I think they are beautiful, and so clever and just, so amazing. But that doesn’t make it any easier to bear when I can see they’re developing skills Kai might not. That all their babies are holding their heads up by themselves, exploring the world with their mouths, physically able to grasp things, and bring them up to their face, to make eye contact and respond, to be able to bear weight through their legs… I adore these little babies, but every time time I see them there's a grieving process for Kai. Every time, a little unintentional dagger to the heart.

And it’s not that I compare our kids, because I can’t. Our beautiful little NKH baby is doing things his own way, at his own speed. It’s that I’m still grieving this whole situation. That we’ll never get the typical version, that there is a lot of pain and goodtimes and heartbreak ahead for us and Kai. I’m of two minds - do I plunge in and socialise as much with these typical babies as I can, effectively ripping the typical comparison band aid off and at the same time normalising disability for a few people, or do I quietly step back (my current strategy, having just been at hospice).

I had a look for Special Needs parents groups in my area. I found a lot for autism, and ADHD, and down syndrome. Able bodied special needs. There was nothing for severely disabled special needs. Or rather, nothing that a quick google/facebook search threw up. I’m so disheartened. Where are the parents who get tubes and feeding pumps and wheelchairs and drool? The parents of the nonverbal and non ambulatory? Where do they hang out?

I think we mostly hide. Our days are so chaotic, and most days I feel like I'm only just holding it together, so most days we hide. I figure the special needs families in our community are hiding too.

Edit:

<3 for all the comments and suggestions. Yes, there are services and we're pretty aware of whats around us. The problem with services is that they are at a fixed time once a week - if Kai's ill or we have other therapy on, we're out of luck. Example: We've had a standing appointment for our local Small Steps for the last few months, and each time our appointment comes up Kai isn't doing well or we've had more important appointments, so we've missed it.

Here is what I'd like: a relaxed group of local people who meet irregularly and informally outside of any services. Like the amazing-ness of our NCT social circle, but special needs. 

Help us fund a cure by listening to brass bands + eating pasta

We’ve been trying to find our feet with fundraising. It turns out that fundraising is HARD. We know can’t continue to ask you wonderful folk of #teamMikaere to keep donating. So many of you have donated already, and we’re so so grateful. So genuinely grateful I want to hug all of you.

But every time we talk to our researchers, we get a similar message: there’s no evidence, because there’s no research. There's no research because there’s no funding. It’s difficult to hear that, that between me and my son’s future is something as stupid as money. And as much as I’d like to be on Ellen, showing off Kai’s cute face, or coming up with the next act of viral craziness (the most marshmallows in your mouth challenge? The mannequin breaks into the running man challenge?) I really don’t think it’s going to happen. 

So. We’re trying events, things people can come to that they’d pay for anyway. Here is what we currently have:

 

The Fulham Brass Band Concert

When: Sunday 21st May, 3pm - 5pm (this weekend!)
Where: St Etheldreda with St Clement, Doneraile St SW6 6EL London
Tickets: £11 - http://www.wegottickets.com/event/396988

They’re doing a bake sale and a collection for Joesph’s Goal. We’re very very excited. 

It turns out two friends at our NCT group play in the The Fulham Brass Band, and they do charity concerts. This particular concert has James Fountain - the principal trumpet of the Royal Philharmonic Orchestra. They’ve spun an English composer theme, and the programme includes Queen, Andrew Lloyd-Webber, Gavin Higgins, The Beatles and Richard Rodney Bennett.

We’ll be there, if you’re in London - fancy joining us?

 

The Cooking School #teamMikaere Pasta Class

When: Friday 23 June, 7pm - 10pm
Where: 3 Enterprise Way, Wandsworth, SW18 1FZ
Tickets: £75 http://theavenuecookeryschool.com/shop/courses/teammikaere-charity-dinner-class/

We’ve managed to snag a class - dinner (Pear and Ricotta Ravioli with Beurre Noisette, Rocket Leaves and Shaved Parmesan), dessert (Lemon Posset with Rosemary Thins and Raspberry Coulis) and Bottomless wine (!!!!) included. 

The thing with the ticket price…. a large portion of it is donated to us. We’re so so lucky that the Avenue has agreed to help us out. Spots are limited to 24, and we’re excited! Please come. You know how much fun we are on wine.

We’re also looking at a wine tasting, a 5k, and reaching out to local businesses for christmas jumper days + schools for non-uniform days. We’re not quite sure how it’s going to go, but we’re hopeful. So so hopeful. 

 

If you can come to the concert, or join us for the pasta making class, that would be amazing. Please come. Please help raise the money for NKH research.

On Neurologists

Since Christmas Kai has had a new community neurologist. I'm not sure how I feel about neurologists. Most are fairly logical and we get the 'we can't treat the underlying disorder so let's just make Kai comfortable' line over and over.

Our new neurologist... he's a bit different. Typically you like your doctors, as someone of authority holding lots of trust over your health, to be straightforward and logical people. Our other neurologists with the doom and gloom line have been. Very logical. Very straight forward. Very doom and gloom.

Our new guy is much more stream of consciousness than linear and straightforward. His mind is clearly going a kajillion miles a minute and what comes out his mouth is a stream of this point and that point with this study and that ancetodotal story.

But. A huge bit giant but. He is the first neurologist to offer us help. To offer slightly out of the box treatments to help protect Kai's brain. He hasn't given any guarantee's, and as far as we can tell, there is no harm. But, he's given us something small to try.

I think you have to be a certain kind of person to be willing to go over and above the usual 'we only operate within the box of typical management options' to explore other options.

Our neuro guy? He is it.

We're willing to try it, assuming the harm is limited or can be mitigated, that there is some supporting evidence (even if it's minor) and we put measurements in place to determine its effectiveness.

So, on one hand, hope.

On the other, at the same appointment I was completely blindsided by another sign of Kai's disability.

We measured the circumference of Kai's head. As far as I can tell his head looks in proportion with the rest of him, I was sure it was growing like it should. And sure, it's growing.

But not in line with his age, weight or height. He's in the microcephaly range. His head isn't growing as much as it would be in a typical child, because his brain isn't growing as a typical child's brain is. My babies brain is not growing as it should be.

Another physical sign of my son's disability.

It's hearbreaking, hey. It knocked all the wind out of me, and while the appointment moved on I was struggling with all the emotions.

When we got back to hospice later that night, Kai was having a speight of seizures and as I held him outside in the hope that the cooler night air would help, I cried.

I love my little guy so much. I have so much hope, but every day I grieve for him. Every day I grieve for the uphill battle he fights in his little body.

And I struggle - trying to weigh up what's best for him, what treatment we should and should not do, what questions I should be asking. I have to turn away from the emotional to be able to go into an appointment and have those conversations, but you can't deny the emotional impact. It comes out and when I take the time to feel it it's overwhelming. I find it so difficult to align my logical treatment plan and emotional sides.

Fighting for Kai, it's an everyday, every moment thing. To be honest, some days when it's overwhelming I hide. I'll lose myself in a movie, or a game on my phone for a moment or two. It's hard to switch off. I feel like I don't know enough, that I'm not talking to the right people, that I'm not doing enough research, or not organising enough fundraising events, or just, all of the things.

I don't feel like I'm enough, and that's hard, because I have to be. For Kai, and his future, it's on me and Sam. We have to be enough.

On crisis periods

Kai's seizures have escalated. On Friday they amped up to around a seizure a minute. A *minute*. We thought we were managing. Kind of. We have nurses who were constantly on the end of the phone with us, and we ran through our emergency seizure protocol on loop.

By Saturday we fled to Sams  parents for the extra help and come Sunday Sam and I were sleeping in three hourly shifts to ensure not a single seizure was missed. They were never ending, with breath holding, weird apnea episodes where during or after a seizure Kai would stop breathing for a bit.

It wasn't feasible - not long term. Come Monday we were back home and Sam was meant to be working, and we were both so sleep deprived. Our symptom care nurse called it, we went into A&E to see if we could figure out the cause and then onto hospice for a symptom stay.

We had a new registrar in A&E (and again we went through the spiel, hyperglycinemia is not hyperglycemia, I promise he doesn't have a problem with blood sugar). We felt like old hands at this. I had the cheat sheet ready with all the contact info, the med schedule, and the big red writing that said cinemia, not cemia.

Truth, we don't know why his seizures kicked off so much. It could because he's teething. It could be because we recently tweaked his meds. He could be sick. Too hot. Overstimulated. Constipation. Or It could be NKH progression.

In the end, our Community Nurse snuck our Neurologist out of his office and down to see us in the A&E. I love our neurologist. He's a guy who loves his job. Who likes his patients, and genuinely cares about Kai. He takes the time to greet Kai, rather than just talk over him at us. He's a lovely man whose brain moves a kajillion miles a minute. We like him.

Essentially, he told us to go to hospice, and hang tight. We moved the medication thresholds back so we weren't sedating Kai quite as often, and we waited.

I've never been so grateful to get to hospice. Sam and I were so fatigued, so sleep deprived that Sam was asleep before we even finished check in. I fell asleep in Kai's room, not even making it up to the flat. I'm so grateful for having the hospice support. I'm so so grateful they were there for us. Grateful that there  are people who know us, know Kai that we can trust to take care of Kai. I don't know what we would have done without them.

Sam and I spent the next few days recovering. I had no idea how sleep deprived we were, how much we were surviving on fear and adrenaline. Even having one good nights sleep under our belts, it took a few more days before we lost that hungover, groggy feeling. Sleep deprivation is horrid.

Kai had some hard days. Lots of seizures. Mostly sedated, very little awake time. I hate those kinds of days with him, I really struggle. I can't settle, and my brain goes a kajillion miles an hour second guessing everything we've done, trying to figure out the correlation between seizures and everything else.

We had a conversation with our palliative care consultant. We talked about the meds, and how one of them, the one we upped, an anti-epileptic effects another one, one we hadn't upped, also an anti-epileptic. They are apparently processed by the same enzyme, and while the hospital neurologists assured us they shouldn't interact which each other, when we upped the second anti-epileptic the seizures reduce slightly.

Kai started having more awake time, and seemed a bit more with it. Enough, that after a week, we were able to come home. Thank goodness for that.

Even better, once we were home I argued for a reduction back to the original levels, and his seizures came down even more.

Kai is still having seizures. They're still part of our everyday, and we still often have to give rescue meds. But, we're away from every minute. We have clear gaps after rescue meds, giving his brain time to recover. We've worked out a routine which means both sam and I get some sleep (kind of. Kind of not really, but better than sleeping in shifts). We invested in an angel care monitoring thingamabob so if Kai has an apnea episode while sleeping in his crib, we will know about it. I'm investigating wearable monitors, but we will see.

So, we made it through another crisis period. Thank goodness for that. 

On seeing the deterioration

This last speight of seizures have done something to Kai's brain. While Kai was in intensive care over Christmas a neurologist said seizures less than 5 minutes don't do any harm. I'm not sure I believe that based on the changes in Kai. It's so demoralising watching Kai become more and more, for lack of better word, disabled.

Way back in December, when Kai was not even two months old I thought the doctors were wrong. Kai behaved like a baby, you'd never know he had a disorder by looking at him. Clearly he was just fine and didn't really have NKH (spoiler: not fine). Then after our epic stay in intensive care/hospice over Christmas I thought they'd got the severe diagnosis wrong, as he clearly looked mild. (Spoiler: not mild).

After this last round of seizures, it's hard to deny. Kai's stopped making eye contact. He almost always looks top left now. If he looks elsewhere his eyes don't always look in the same direction. And he's stopped using his arms unless he's incredibly agitated. I know it's not the seizures causing the changes per say, that it's NKH underneath causing the seizures and the brain damage.

It's just so heartbreaking. I know that I use that word a lot, but I feel like we're being hit with one thing after another.

Nonketotic Hyperglycinemia. What a bitch.

On NKH Awareness Day

A quick break from the doom and gloom seizure posts for just a moment - NKH Awareness Day was yesterday, and oh my days. So many people made their facebook profile pictures yellow. So many texted donations in. So many shared our posts and commented and liked and just... it was so comforting to see how much people care about our little guy. 

I've been quietly running a small campaign for the NKH families for funding the week before awarness day, over at fundnkhcure.com. I feel like we've spent so much time asking our friends and family for donations, that this one time, this one day of year it was okay to ask the NKH families for a small token.

Except that it spilt out around the edges, and then exploded on the day itself. Before I knew it facebook was yellow, and we managed to raise over £2000. 

I can't even begin to express the love and genuine gratitude we have for the support. For every single person that changes their profile picture yellow. For every £3 donation. For every message, like, and share. We're so lucky, so so so lucky that you all are on #teamMikaere.

You guys are amazing. You are literally the most beautiful, loving, fucking brilliant group of people I've ever had the privilege of being connected to. We're so grateful for the support. Words aren't enough to express how grateful we are. We love you guys. Thanks for being on our team x

On the seizures are getting worse

Way back in NICU, when they told us about the seizures, I imagined that they'd be like the seizures you see on tv, the big grand mal ones with shaking and jerking and frothing. I was prepared for this big Acute Event, capital A, capital E.

Turns out our acute events are quiet. A small, tiny, twitch that won't quit. I've been watching Kai's hands rhythmically clench for almost two hours now. My babies brain is broken. So so so broken. 

I know which bits. I know why. I know which genes have a missense switch, I know how the p-protein isn't doing what it's meant to. I know his brain is broken. I'm  heartbroken there isn't a way to fix it. So I watch the twitches, and wait for them to morph into fully blown seizures. We've already escalated. We did the first buccal five minutes in, after the first seizure that didn't quit. The second fiveteen minutes later, when he was still twitching and seizing.

We even went as far as the next step, the rectal paraldehyde (that was good as far as lightening the mood went. Hard to be in tears when you're holding your babies bum cheeks together and poo slides out in between your fingers). We've never gone that far at home before, and it worked for a moment or two.

Then the twitches were back. Even as I was holding his hands, his movements didn't stop. That's how you know it's a seizure. So we escalated again, and gave a quarter loading dose of phenobarb.

The last time we did this was Christmas Day, the day he was admitted to intensive care. 

The fear, I have it. I have it in droves. This time I know we won't go to hospital. We won't be admitted to intensive care. Our symptom care nurse reassured me that we can manage this from home, that we were still a day or two away from a continuous infusion, and even then, we have a giant toolbox of meds underneath our bed to manage that. The emergency IV box for just in case. 

And I hate that it's there and I hate that we need it and I hate that just in case is absolutely a possibility.

My baby is in a drug induced stupor, a groggy horrible dozey state, so so far from his happy self, and still with the twitches. It's heartbreaking. I'm sleep deprived, because I can't sleep when my baby is sleeping through the night. Sam and I are taking it in turns to sleep, which isn't feasible in the long term, but allowing Kai just to seize isn't an option. It just isn't. 

I hate this. I hate NKH so much. This is why we fundraise. This is why we're looking at putting on events. If you ever wanted to hold a bake sale, or a BBQ or a poker night for NKH, please do. Do it now. 

I have The Fear that with each escalation point on our seizure plan, we move away from symptom care into end of life. The Fear. I have it.

On managing the seizures

I hate giving him buccal. I hate it I hate it hate it hate it. The midazolam buccal is an anti-epileptic that comes ready drawn in a 2.5mg syringe. We squeeze it between his gum and his cheek, half each side. It's horrid. It smells horrid, it tastes horrid. And worse, it's a sedative. It knocks Kai out and makes him groggy. 

Because that's how we deal with seizures we can't control. We sedate Kai. And I hate it. Hate it hate it hate it. But despite hating it I follow the plan: we give one when he has a seizure of more than 5 minutes, or if he has three seizures of any length in an hour. 

I hate that that's the choice: a sedated groggy baby or a baby that seizes over and over and over again. I'm grateful that we do have something that is currently effective against the seizures, because it was only Christmas when there was nothing that helped, that Kai was in a never ending seizure coma in intensive care. But I hate hate hate that sedation is our only option.

Kai hates it too. He screams when it's in his mouth. As I syringe it in I'm almost crying myself, crooning apologies and platitudes and trying to offer what comfort I can. Some days I debate with myself whether it would be better to let him have the seizures. In between the seizures we'd be in the presence of our little guy, awake and here and with us.

I've never won that argument with myself though, his brain is too precious, as broken as it is. So I count how long each seizure is, I write down when each starts. And when we hit the threshold I give the buccal and then I cry. It's heartbreaking hey, to have to sedate your baby to stop seizures. 

Some days it's just about moving forward, and some days it hits me like a ton of bricks. 

On the Rock Choir fundraiser

Kai's grandma sings in the Dunstable Rock Choir, and they held an informal concert with raffle for NKH research. 

Oh. My. Days.

I'm a bit overwhelmed. It was a lovely concert, with lots of fun tunes. Kai enjoyed it, kicking happily to the first few tunes before giving over to sleep. We had the opportunity to speak mid concert and Sam did. It was emotional. Telling a hall full of people that our little baby, the baby that's just right here with the beautiful chubby cheeks has a terminal disorder with limited treatment options... that was rough. Both Sam and I were felt pretty emotionally raw, sharing these tough things with a hall full of strangers, but we were so well received. 

There was so much love. So many people stopped to talk to us, and so many people donated, either by buying from the raffle, donating to the raffle, or by putting money into the bucket. We raised a staggering £700 in a night! £850, if you count the donations that came in after.

I can't even begin to share how much that night meant to us, as a little family. Having such an overwhelming positive response from so many people, having so many people donate towards research. Having so many people say hey, we believe in a future for your baby, and we want to help. It was intense. 

We're so grateful. Thank to you to the choir, thanks to everyone who came out, thank you to everyone who donated. We're so so thankful. 

On teammikaere.com and fundraising efforts

YOU GUYS! We're so grateful to everyone who has offered to help fundraise. From work Bake Sale's and raffles, BBQ's birthday parties and housewarmings, were so so lucky.

Because we have so much going on and there a few things all over the place, we thought we'd create one spot to find everything. So:

 

www.teammikaere.com

 

It's got a list of how much money we've raised, what events are coming up, how to donate, links to my blog and Sam's blog, and how to donate.

Its even got a store, were selling a few fun things with all proceeds going to NKH research. 

We're so lucky for your guys support. Thanks for being in our corner.

Making it out

We've been sticking close to home, because going further afield requires more kit and organisation than the effort warrants. Even a trip to the supermarket not two minutes away requires the emergency kit (ambulance directive, emergency meds, the small folder of notes, just in case).But sometimes there is a something that's worth leaving for. Friends of ours, friends we adore and are so grateful for were having a baby shower and I was *determined* that we were going to go.

So, we packed the emergency kit, and the meds for the day and the pump and supplies and testing strips and syringes (as well as the usual baby stuff) and off we went, driving across London. We were several hours late but oh, the sheer glee at making it at all was brilliant. We were there! At a baby shower! With other adult people! With our friends!!

It was nice. It was more than nice. I felt like a superhero, that if we were managing to get out and about that we could do anything (my bar is set pretty low, just showing up right now is huge for us). Making it to the baby shower, hanging out with our friends, meeting people who didn't know our story and didn't start the conversation with grief/pity/awe was so refreshing. 

And our friends, oh my days. They came to visit us when we were in intensive care, so that they could love on Kai outside of hospital - I was positively ecstatic.

Sometimes the huge, crazy effort of getting anywhere is absolutely worth it. Good day. High five us!

On getting into a routine.

Since being home we're easing into a routine. It's not smooth sailing, more like a clunky side jerk, but we try.

Kai's routine revolves around medication and feeds.  We start at 5:30am and finish up around 1am, and in between it's a dance of setting up feeds, drawing up medication, therapy, sterilising, washing and naps.

It's a full on, and while we'd like to settle into it, we're constantly thrown off. Seizures ruin everything. We have someone come and visit us pretty much every weekday. Nurses, therapists, dieticians, support workers. A visit or therapy that starts late or is commandeered by a nap will push out feeds (as if we did something like physio on a feed he'd vomit) which push out meds (as some of his meds require a full stomach) which push out the next lot of meds (as they need to be so many hours apart). 

We try though. We plunder through and try to manage all the ebbs and flows. In naps I do all the washing (we use cloth nappies, so there's an endless cycle of washing on) and all the sterilising (every syringe, every bottle) and drawing up meds and formula, so it's easier to manage. We try squeeze in homework. A few moments of tummy time here, leg stretching there, hands crossing the midline. We massage the old infected subcut site, to bring down the lumpy abscess that was left. We do a few moments with whatever portage has left us with - this week its a wind up music box. We hold it against his hands, so he can feel the vibrations, but can also pull away if he's not enjoying it. The week before it was the space blanket, kicking and touching to get the crinkley noise.

It does make it tricky for fun stuff. Which is why I'm grateful for Sam. By the time Sam gets home he's full of energy and happy to see Kai - he takes on the light hearted moments in the evening.

Sometimes we even manage a social something a rather. A walk with our NCT friends. Dinner with our nearest and dearest. Play dates with friends who have their own babes.

This is assuming, of course, that we're having a good day. If Kai's having back to back seizures, is inconsolable or requires a hospital visit everything goes out the window. In those times we operate on adrenaline. Meds and feeds are prioritised, everything else is dropped while we concentrate on managing whatever crisis comes our way. 

So, yes we have a routine. And we'd love love love to settle into it. And we do, on good days. On bad days, we do what we can to get through. So yes, we have a routine. We're not pro's at it yet, but we're getting there. 

On leaving Kai behind and hating it

When I was heavily pregnant August last year, I was very very excited when I managed to procure two tickets to see Harry Potter and the Cursed Child. Fast forward to now, after months of waiting and our show date is finally coming up, and it became a bit of a logistical problem. While we were keen to go, getting care for Kai is difficult. He has an insane medication schedule, and he has equipment for feeding and there's the testing that happens anytime we do anything with the tube.  Standard for special needs babies, but well over and above anything we could expect a babysitter to handle.

I have one friend (who I'm so grateful to) who comes on the occasional Monday and has taken on the task of learning how to feed Kai via the pump, and we have a hospice at home carer and a nurse who we're allocated three hours every two weeks... however neither of those options were going to cut it for a whole evening.

So, we went back to hospice for respite. Logically it works out - they know him, Kai knows them and the space. Sam's Mum came down to the hospice to spend some time with Kai. We stayed Tuesday night, and then on Wednesday morning Sam and I left to go to the theatre.

Well. 

Leaving Kai, as logical as it may seem, best case scenario and everything - I did not want to. I did not want to leave Kai for a whole day. I did not like it at all. Leaving Kai behind is always, always the hardest thing. I've come to realise that I know Kai best. I know how to care for him best. So leaving him to hospice nurses, who are amazing, and wonderful, is always going to be, well very very good, not as good as me and Sam.

I know that we can't do 24/7. I know that it's unreasonable to think that we can.  That doesn't mean that emotionally I'm on the same level. I'm not. Leaving Kai was horrid.

We walked out, leaving Kai in the very capable care of the hospice nurses and his Grandma and went to the theatre. We had a lovely day in London, fancy lunch and dinners and the theatre. In a past life I would have been ecstatic. In the After, London is very loud and people are very rude, and care about things that aren't important.

The show itself... some of it was very clever. Some of the magic tricks were brilliant. But I think that my idea of what is important has changed, and with my baby in hospice I found it hard to settle. I think that at the heart of it, the story could have been told in one show and there could have been less dancing wizard intermissions. I was very glad when it was finished, which was not how I expected to feel at all.  I think that's what happens when something from a previous life is out of place in your current life.

If leaving was the worst, coming back was the absolute highlight of my week. When we arrived at hospice, I skipped the signing in and hurried down the hall. I could hear him crying (break my heart) and when I peeked into the door he was having his nappy changed. I waited till his bum was clean and dry and scooped in for a cuddle.

Oh the joy, the absolute joy. Kai stopped crying, and smiled. He even laughed, the first time I'd ever heard him do so. He was very very happy to see us, and knowing we were missed - though I hate the idea that he even had the chance to miss us - and that he was glad to see us made me so ridiculously happy. 

It was a nice night out, and I was glad we managed it. I don't think it'll happen again for a good long time though. Time with my baby is well too precious for things like theatre. I feel like we've had so little time with him, I'm loathe to give it up for something like dancing wizards.

On #blessed

I can't even explain how grateful I am to be home with Kai and Sam. In our own place, with our own stuff, with all of that beautiful privacy. This past weekend we went for walks, and cuddled on the couch for family movie night (super not age appropriate, we watched War Dogs) and on Sunday? Sunday I spent the entire day in my pjs with my boys. Delectable.

No nurses, no home visits, no drama. I can't even begin to tell how beautiful this time is. Sam even bought me tulips on a whim. I'm so lucky, I know the hashtag is overused, but genuinely, when I get to have a day like today I feel genuinely #blessed. Normality hey, it's super underrated.

On being in the A&E

Well, fuck. I don't know what to say. We're in the A&E. At first it seems innocuous, we got Kai's glycine bloods back from last week, and they were a staggering 177.

Now here's the thing, 177 is good, it's within normal glycine range.... but it's not Kai's normal. Kai's normal sits at 250-300.

The thing with Sodium Benzoate is that if there is no glycine to bind to, then it gets toxic. If it's toxic, then calcium and potassium get dangerously low. So I rang our CCN (community care nurse) and practically demanded bloods taken, so we could find out. She asked us to come in tomorrow, but I persisted. The glycine results are a good week old, and I worry. I worry because the last time his glycine was this low, we were admitted into intensive care.

On top of this,Kai's been grizzly all day, and when he's not grizzly he's sleeping, for longer and longer periods (another worrying sign, similar to our pre-intensive care stay last time). And the seizures. Oh the seizures, they're more frequent, and longer in duration. Add the vomiting and I'm all over the place. Is it that he's teething? Is it that the vomiting is causing an absorption problem with the phenobarb? Is it sodium Benzoate toxicity? I don't know. We got a taxi to a&e who were expecting us. We walked in to see Dr Lukas, one of our regular registrars from our last visit. I'm glad we knew him. I'm glad he knew us. I was so relieved.

So, we did bloods. Bloods for kidney function (sodium, potassium and calcium levels) and liver function (phenobarb levels) and for amino acids (oh hey glycine) and two pipes, covering blood/gas and a regular blood panel. 

But then Kai didn't keep his feed down. And he was inconsolable. And then he had three seizures within an hour. Our emergency plan kicked in then, even when we were in a&e. We busted out our rescue meds, and Sam (having arrived after work, I'm so grateful for Sam and that he came) gave buccal midaz. Poor Kai. He was screaming at this point, and then the midaz knocked him for six. Oh my baby. 

I also called our symptom care team to let them know what was going on. I was very in control, but inside? All over the place. Emotionally well all over the place. I felt like I leaking out the edges, I was stressing out over his feed (we didn't have a feed pump, and I kept forgetting to ask the nurses for what I needed, so every time they came back I was asking for something, a 20ml syringe for an aspirate, a 10ml syringe for a flush, sterile water to make up a feed, more for the flush... on and on. I was very glad when Sam arrived. I'm always much more centred when Sam is around).

We were moved into a bay closer to the nurses station, and then into the assessment unit. And then came the waiting. The endless endless waiting.

Fingers crossed hey. Fingers crossed he's going to be okay.

Update: 

Bloods came back good hours and hours later. It's teething. We think. It's definitely not Sodium Benzoate toxicity. Thank goodness. It's the not knowing that bothers me, so I'm grateful to know for certain. We're going home.

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