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.