Dear Kai - Month 5

Dear Kai,

Another month - I can't believe how much you've grown! Those cheeks! They're so big, one of your nurses insisted we weigh you to see if you'd jumped a percentile. You haven't, you're growing just as you should be, but apparently it's all in your scrumptious cheeks.

This month we got to take you home. Can we just pause for a moment and celebrate, we went into hospice on end of life care, and we were able to take you HOME! Being home as been wonderful and crazy. So wonderful, so crazy. So much chaos. I'm loving this time with you though, I love spending my days with you, though they seem to pass in a flash with your schedule.

Your schedule is crazy hey. With the meds, and feeds and all the therapy. It's been the month of a meeting kajillion new therapists. Physio and dieticians and nurses early support and portage. The list is never ending. We're getting into the rhythm, we have so many people through, easily someone every day. I very quickly started reserving Mondays 'just for fun' else we'd be overrun. You're best in the morning, and enjoy physio and play therapy with portage. You easily charm everyone, your hospice carers, our health visitor, the slew of nurses and dieticians. Our people often say they're not meant to have favourites,  but they do so enjoy spending time with you! I'm so grateful they come to us, because schelping you about with all your kit requires a plan executed with military precision.

We do manage to get out, though. It took a week or two - for the longest time we weren't able to settle in, just us three. We were always at the hospital, or hospice. So for the first few weeks at home we hunkered down - loving on you, trying to get into a routine and come to terms with your insane schedule of meds and feeds (we're still waiting for it to break in a little, for it to feel more like second nature rather than like we're always behind the ball).

Once I got over the babies-without-rare-disorders fear, we went to all the (very local) places. We tried Baby Bach (not your thing) and we're doing pretty good at walks around the river. Hanging out with our NCT friends has been pretty fun too.

It's hard not to compare developmental milestones, so we try extra hard to celebrate what you can do. Your suck returned, and with it your love for the dummy. We also do a bit of a bottle feed before each meal, if you're awake. Your first tooth came through (!!) and we discovered that if we roll you onto your side, with some determined kicking you can roll yourself onto your back. Every day we manage a little bit of physio, and a little bit of portage homework. You're not a fan of tummy time. Not even close. Your head is still wobbly, but sometimes you'll give it a go, holding it up unsupported for a microsecond here or there. You're much more active, and talking to us. You've found good use for your voice! It's such a delight to hear your happy gurgles.

We're not much into a routine outside therapy, meds and feeds (your medical needs make it difficult) but when we can you enjoy baths with Daddy and afternoon walks. You've outgrown the carrycot, so now you sleep in the big crib at night, and ride about in the pram proper. We've had a right old time with the weather shield (and we now know for certain that you hate wind). It's better now that I've figure out how to put it on correctly.

You're getting pretty good at pulling out your NG (though I'm a bit better at stopping you). You almost always end up in our bed in the mornings (one, cause it's easier to give meds if your next to me and two, baby snuggles). Though throughout the day you nap wherever you happen to be lying.

Your meds continue to be difficult, you struggle to keep them down, so we spend a long time dancing about to give you the best shot at not vomiting. You've also had your first proper cold, and with it came a slew of seizures. You were also on antibiotics preventatively, to ensure you didn't get a chest infection you couldn't fight off. Helpful because you weren't able to cough up all the mucus that was sitting on your chest. We spent an awful lot of time trying chest physio!

This month really has passed in the blink of an eye. Daddy dressed you up in an England onsies for the six nations (though rest assured, you'll be in an All Blacks onsie when they thrash England). I managed to carve out some time to crochet a hat with ears, which you're not a huge fan off. We've also been socially able to meet more of our friends. It's slow going, as we're wary of overwhelming you (and then there's the fear of you getting ill as people touch you with unwashed hands, or worse, if people try to kiss you). Still, I can't get over the pride I find in you when my friends (appropriately sanitised) get to love on you a little. My bonny wee guy!

You've done well this month with hospital visits. We only had one trip to the A&E, which you handled like a pro. We were lucky enough that instead of being admitted, we were sent back home! Good job, little guy. We were so pleased.

Another highlight was meeting the Mayor of Wandsworth for tea in his fancy parlour. You seemed not fussed, but it was a a nice song and dance for Mummy and Daddy! We also managed some Mummy/Daddy time for Daddy's 30th. We left you for the first time in the capable care of our hospice carer and went out to dinner for a few hours. It was both the longest and shortest few hours ever. I hate leaving you baby, but it was so refreshing and weirdly bizarre to slip back into a parody of our pre you life. I've never been more grateful to be home, though. I feel like every moment with you is a precious one, and I don't want to miss a single moment.

I'm so grateful you're home, baby. You've changed our lives in such a fundamental way, and I can't imagine life without you.

Love you more than you'll ever know,

Mama x