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!

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. 

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.

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.

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.

The Mayor of our borough is a patron of our Hospice – run by the charity Shooting Star Chase. And as such, he invited the hospice goers to tea in his parlour. Sam was keen to go, so we dressed up in our Sunday best and off we went. To tea with the Mayor of Wandsworth.

Can I just say first, the Mayor has it well fancy. You walk into the lobby and all the floors are marble, and fancy panelled walls and it’s all very very oh la. He’s also driven around in a limo. 

It was a lovely little meeting. We talked about Changing Rooms, and generally about Kai. The current mayor is Councillor Richard Field – he’s lovely. Before being Mayor he worked at Twickenham – he had some lovely stories to tell about Sean Fitzpatrick.

It was a pretty nice tea, actually. Very fancy. It’s nice to feel like we’re part of the community, and I appreciate that the hospice invites us to events like this. 

Okay. So it looks like we have them under control. Ish. We’ve adjusted his meds for his recent weight gain. We give the phenobarb and sodium benzoate slowly, at the end of a feed, in the hope he’ll keep them down. If Kai doesn’t, hes already had some time to absorb the others.

So, we move forwards. Seizures are back as part of our days. We manage them. We keep them under control. We can totally do this.

And just like that, after such a good spell, the seizures are back. They look different, having changed their MO, and I didn’t identify them as seizures, but the more they happened, the more sure I became. 

I’ve just faced the fifth seizure of the day, and I’m heartbroken. More than heartbroken, that word doesn’t even begin to convey my despair, my fear, that sinking feeling you get when you suspect your world is tipping over sideways again. Do the next few days mark the beginning of another stint in intensive care, in hospice? We’ve only been home eleven days. 

We suspect it’s because Kai is not tolerating the phenobarbitone. He vomits consistently after each dose. Doesn’t matter whether he’s on gaviscon, before the feed, after the feed, diluted. I hate pumping his little body full of drugs, I hate when he vomits, he gets so upset, and holding your baby while he screams is horrid. I always want to cry along with him, it’s so unfair. So horrific.

It’s in such contrast with happy Kai. Sometimes, after a feed with no meds I’ll get a glimpse of what it could have been like. With a clean nappy, a full belly post burp, he’s positively delightful. He smiles, and coos and makes eye contact. He lights up my whole world. He’s happy, and will interact with us. 

I love that little version of him, and I’m constantly striving to keep him in his happy place, but it’s so fleeting. We give him so many horrid meds. He vomits so frequently. And now the seizures are back. 

I just feel battleworn. We’re only four and a half months in, and I’m battleworn. The only way I get through today is by hoping tomorrow will be better. That tomorrow there will be less seizures and more smiles.

Please, if there is ever going to be an end to this, it’s in a cure. A proper, honest to goodness conditional gene therapy cure. 

I know I’ve asked a kajillion times, but on a day like to day where it’s so clear that every moment we have is precious, that every day could turn, I’m going to ask again:

Please donate towards research. Please. 

If not via donation, please fundraise. 

Just, please help us fund a future for our son. 

I decided that, despite my dislike of being reminded just how disabled Kai is, I couldn’t avoid neuro-typical babies. That to try would mean becoming a hermit lady and never seeing any friends. Not the most viable plan I’ve ever made. As much as I’m still grieving Kai’s alternate healthy future, I decided that I would just pull the band aid off quickly and surround myself with neuro-typical babies. I wanted to be over this.

Conveniently, NCT has provided a whole group of lovely beautiful neuro-typical babies who were about Kai’s age. Since we were in hospice, I’ve ignored the whatsapp group we had. I hadn’t said we were back, and when they organised a trip to our local Baby Bach (a small concerto for babies in a local church) I was determined we would go. 

Can I just say that getting out of the house when it’s just me and Kai is a giant faff of a mission. Not only do we need the typical round of nappies, wipes, change of clothes and a bottle, but we also had to have the meds, the emergency notes, the emergency meds and the escalation meds. We had to have the feeding pump, the strips to check the ng, syringes for aspirates and the power cable (just in case). The last time I went out with our NCT ladies, it was coffee and I ended up calling an ambulance for all the seizures. I’d forgotten half the emergency meds and the power cable and ended up being quite stuck. Never again, now we travel with everything on the off chance we need to go to the hospital.

So, I drew everything up ready to go, for both the feed and meds we’d hit the end of, and the next lot just in case. I managed to load Kai into the buggy (I actually did it three times, after a nappy and a vomit required two hasty buggy evacuations) but when I locked the flat door behind me, I mentally high fived myself. We, at the very least, had left the flat.

I wish I’d looked out the window before we’d left, I might have changed my mind. It was windy. Hurricane windy. Pull tree’s down windy. From the gate it didn’t look too bad, so I chanced it. What a terrible, terrible idea.

The church was a 20minute walk away, with a big park in the middle. The walkway through the park was like a channel for the wind. Twice the buggy was almost turned over. With Kai in it, and my holding on. I might as well have been walking a giant sail out and about. Worse, was that I hadn’t realised that our weather shield was actually for the carrycot. Kai has grown out of the carry cot with his long legs, and was sitting the pram proper.  Which meant that the weather shield plain didn’t fit. 

Needless to say, Kai now hates the wind and screamed the entire way there. 

When we finally got to the church, I had another high five moment. We made it out of the flat, and despite the weather, to our destination and just as the concert was starting. No matter what else happened that day, we’d already gone over and above my expectations.

Which was pretty lucky, because Kai did not care for the concert. Not even a little bit. There was lots of screaming and at least half a dozen poopy nappies. It’s like he saved up all his poop and then released it all at once in protest. We spent most of the concert in the bathroom. Which, by the way, the baby changing station was in the disabled bathroom which I’m pretty sure no disabled person was going to fit in, considering how small it was. On top of that, perfectly capable non-disabled people had used the bathroom and it smelt rank. People are so gross.

So, instead of spending our morning like I imagined, blissfully listening to a world class pianist play some pretty music, we spent it stressed in a horrifically smelling bathroom. 

By the time Kai was empty, we had managed to catch the last song, which was pretty. And then the nursery rhyme time – that was pretty good too. I think Kai enjoyed that, it was much more upbeat.  And meeting our NCT friends. I’m so lucky to have banded with such an amazing group of ladies – they were openly happy that we were there and not at the hospice any more. Honestly, once I was there it was so easy to shrug off the fear. And oh, their babies. They have such beautiful beautiful babies. 

We spent the afternoon over coffee and it was just, so nice. A nice slice of normality. By the end of the coffee, I wouldn’t have said I’d thrown off the comparison fear, but I’d at least made dent in it. It was nice to hang. Nice to see their beautiful babes. Nice just to be out and doing things.

It wasn’t an easy morning, but I’m so so pleased we went. 

We’ve had to reorganise plans for visitors several times, just because Kai hasn’t been well, or there’s been unexpected hospital visits or whatever. It’s the hardest.

I loathe being socially flakey, I know that friendships are built on time together, on being reliable and just, being someone people want to be friends with and come and see.

We’re pretty isolated at the moment, so when we do see friends it’s more amazing, more touching more everything. I have so much love for the people who have gone to lengths to come and see us, even when we haven’t reached out.

So when we’ve had to rearrange plans again and again, it irks. I understand why we do, and I’ll forever put Kai and his wellbeing over a social visit but it still irks.

I love my friends, I love hanging out with them. We’ve got a great crew around us, really, so to have to rearrange, it just sucks. I fear that eventually we’ll be too difficult to hang with, that we’ll be too unreliable. I haven’t figured out how yet, but I’m determined we’ll have some kind of social life!

So please have patience with us, we still want to see you and know you and we miss you guys. If you’re in London and want to visit, we’d love to see you for something low key. If you’re okay to come and see us, we’d love you even more for it.

Message me with some dates, okay? Seriously – please do. We miss you guys!