inner pickle

all about the boy

We had a trip back to Sydney today, Henry and I. 

We scooted up early this morning to see his specialist speech therapist and pediatrician who we're checking in with every few months. 

What a fabulous day. 

We got there early and swanned around a big brightly lit shopping centre and although we were feeling a bit dazzled we found some sparkly hi-top sneakers for Tilly and some Lego for him. 

We broke up the appointments with a visit to a super brand new squeaky perfect wee nephew. A highlight.  

And we finished the day with a flying visit to our old next door neighbours who we all miss dreadfully and who - all three teenagers - were all there to say hello. 

I realised that although I've been gone only four months, it took just that long to forget about the traffic, the narrowness of a busy six-lane road, the bright and looming fast food signs, the colour of the inner west, the stimulation of all those fluorescent lights we moved around under in one day. 

And although it's been only four months, it was like no time at all had passed when we were in the room of specialists whom we have genuine affection for, and like a continuation of a paused conversation as my favorite neighbor of all time poured me a cup of tea as we sat on her lounge for a chat. 

It was fab just hanging out with Henry too, funny smallie that he is. No sisters to contend with, just uninterrupted conversation. Largely about Angry Birds. But still, conversation. 

Hope you had a day with highlights too. 

One more:

Guess what didn't take me two years to make?

 

I didn't want her to think today was entirely about Henry. New mama-made beanie with crocheted flower. I'm just about up to crocheting an entire doily. Watch out, it'll be granny squares at high noon any day now. 

xxx

this moment

{this moment}: A Friday tradition with Soulemama. Grab one moment from this week (if you're not too busy being in the moment!) One that you just want to hang onto and not forget.

And if you're a blogger playing along, please leave your link!

I'm going to disobey the rules just this once and add some words to this picture. 

This, above, is the baby who started physiotherapy before he was one because he wasn't moving. This is the toddler who we had to strap into calf-high splints to get him up and walking at two years old. This is the boy who, after years of physio and occupational therapy, we're still told will tire quickly, need supplements, disengage, and need help.

Righto, then. Tell him at five he needs pure maths to be an astronaut and watch him inhaling numbers. Send him to school and watch him connecting and befriending. Drop the supplements and watch his health thrive. Turn off the TV, send him outside and watch him run. 

I'm grateful for all the help we've had, but sometimes I think: all by himself, this kid is going to grow wings and fly.

the spin

I have, on occasion, been accused of 'spinning' and I don't mean as in wool and lovely creaky old machinery.

I have, on occasion, gotten to the end of my story and someone, usually a sister, will say: yes OK, now give me the non-spin version please.

When you're a bit of a story teller, it comes naturally to tell the good bits and leave out the not so good bits. To highlight the highlights and shift-control-delete the boogers. So to speak. 

And Now Onto Today's Story!

Guess who I met today?

credit

Julie Goodwin! The lady who won MasterChef! She came into work to record a spot for Food Safety Week and was also interviewed for a new weekly radio show we're producing with Paul Clitheroe and Deborah Hutton.

She was so lovely. In fact, I had a long if slightly breathless chat with her, as she'd parked quite a way from the office and I went with her when she'd finished to retrieve any potential parking ticket. She talked about her book (coming out on Mother's Day) and how excited she was to see a dummy of it and how strange it felt to not be able to test anything any further (the recipes sound pretty meticulously tested). 

I told her about Nigella's erratum that I heard about from Estelle and she told me about Nigella's 'Eggless Cake' that the tester read incorrectly and apparently has eggs in it. In the recipe. 

Anyway, there was no parking ticket, and she gave me the number at The Women's Weekly photo shoot she was supposed to be at so I could call and say it was entirely my company's fault she was running very late, which I did.

So that was fun! 

And now. The real story. (Although the above is perfectly true, too.)

Everything I've done for the past week has been in a bit of a daze as we wait wait wait for confirmation about whether Henry is going into hospital on Friday for major oral surgery, i.e. cleft palate reconstruction and a pretty serious additional procedure called a pharyngioplasty.  

There's been a bit of a bureaucratic hold up between the Cleft Palate Clinic at Westmead Children's and the surgeon. We should have confirmation tomorrow. But it's been hard to prepare Henry generally for the whole idea let alone ourselves if we're not sure it's going ahead. 

And if it does he's likely to be in hospital (me too) for 4-5 days and then home and completely out of action for 2 weeks. I think. 

I'm filled with dread, to be honest. 

It's not a procedure you want any kid to go through let alone your own.

How do you explain to a 5 year old with no abstract conceptualization that he will wake up with a tube down his throat? Or not be able to swallow for days? Or talk properly? 

So there you have it. The non-spin version.

The good news tomorrow will be confirmation in the affirmative, which might sound strange, but the sooner we do this the sooner other kids will (hopefully) understand him when he talks. He starts school next year. So the sooner the better. And I tell you, this hanging on really sucks.

xxx

The Clinic

My little dude has a genetic condition called Velo Cardio Facial Syndrome which I first mentioned here.

Part of this deal is a sub-mucal cleft palate which is a fancy way of saying his speech is a bit hard to understand, notwithstanding almost three years of speech therapy (and the fact that he's 5 and says crazy arsed stuff anyway).

So yesterday Henry and I spent five hours here:

He saw an audiologist, a specialist speech pathologist, a Ear Nose Throat Surgeon and a Plastic Surgeon who specialises in small people's palate reconstruction.

I saw a coffeeologist which was probably my highlight.

Henry, still obsessed with Disney Pixar Cars, got two new cars to see him through:

He had to have a videofluoroscopy which is this cool real-time xray looking at palate movement and the structure of the mouth. In order to see the pharyngeal walls clearly, they had to inject something called Barium up Henry's nose (about the consistency of thin toothpaste) which he was remarkably tolerant about. 

After seeing the Plastics guy, we had a recommendation of reconstructive surgery to repair the cleft and to simultaneously create a pharyngeal flap at the back of his throat.

It's pretty major surgery, he'll be in hospital for 4 to 5 days and post-op can be pretty painful and miserable. Might take a few more cars to get us through this one. 

Luckily for Henry I have, as you know if you're a regular here, a TERRIFIC custard recipe, and well-tried smoothie recipes and it might be about time to knock up some icecream!

We haven't scheduled anything, there are lots of pros and cons to consider, there are a number of risks with the reconstruction, so we'll go back and talk to the speech guy again before we give the go-ahead.

Henry was so fab all afternoon, quite cheerful, introducing his cars to everyone we met. By the end of the last appointment (the Plastic Surgeon) he quietly found my camera and took some photos for his own amusement:

Teach him to hold the camera steady and the kid could be good!

xxx

housekeeping

Hi! I know some of you have already found it but just wanted to draw your attention to the new Recipe Index page on the right hand side bar. It's a work in progress, I'll categorise it so it's easier to use, but at least it's a start!

Thanks to those lovely friends who've been commenting - without your comments it's a bit of a one-sided conversation and I can have that with my navel. Or with Adam when he's crashed out on the couch at the end of the day. Or with Cow, the next door cat. I love Cow. She sits in my dining room in a patch of sun in the morning. I digress. I love your comments because it gives me an idea of which posts people are responding to. 

I'm also going to list in the right hand side bar all the food adventures I plan to have in the next month, it'll give you an idea of what's cooking!

And meanwhile, I'm going to tell you a few things about me. 

I love cooking.

I love medieval history.

I love reading.

I love writing.

I love blogging.

My biggest goal in life is to publish a novel.

I love Celtic music, even though it can be as daggy as all get up.

I love films.

I love yoga.

I love people, generally. (Which I didn't, when I was younger.)

I love this guy:

He's marvellous and possibly the best fella I've ever met.

I love fabulous food and extravagant dinners but most of all I love grilled cheese on toast, sausages, baklava and I love custard. Any kind. Most of all the kind that my sister Naomi used to bring me home when we shared a house and she knew I'd had a bad day. My sister in law Rachel has taken over that post now that Nomie is out of the country and she will occasionally drop in with a pot of custard to ward off the world. I'm very lucky.

I love dark beer, like Toohey's Old, or Stout or Caffrey's.

I love a really big Shiraz.

I know it's horribly corny but I love love love my family. All of them. They're the best people I know.

I love the country (although I live in the city) and I love this house, currently for sale, three hours out of town:

Awesome, hey?

I have a just-turned five year old who's been in various therapies since he was nine months old and was recently diagnosed with a genetic disorder called Velo Cardio Facial Syndrome. He's developmentally impaired and gets terribly terribly tired and is a HILARIOUS mimic and could re-programme your web browser with his eyes shut.

I have a two and a half year old who has been trailing after her brother through hours and hours of Occupational therapy and Speech Therapy and Physiotherapy and is the most cheerful person I've ever met. She's the queen of stripping naked and wearing her swimmers over her clothes. She loves her dolls above all else and I love watching her put them to bed and sing them baa baa black sheep and pat them till they go to sleep.

All right then. 

Shiraz, anyone?

xxx