The difference a year makes

I’ve been neglecting this blog lately, it’s true. Probably a combination of moving house, end of school year (and suddenly Vegemite is home… for nearly 2 months!), Christmas coming up much too quickly, work deadlines and QB going to the UK for two weeks – which when you consider it all together, I reckon is a pretty good excuse. But if you need a better one, the battery on my Macbook has died so it has to remained plugged in at my desk, and I’m sharing my new desk at home with a large spider I’ve named Harvey.

So, this evening, with Lil Z in bed, QB building shelves in the garage and Vegemite in the driveway beating cardboard boxes with a broom handle (an activity she’s taken to with real gusto), I thought I’d grab the opportunity to do a quick post. I’m hoping that tomorrow I will finish my work project and my Christmas shopping and will have more time to write, because there is so much to write about…

However, for now, I’ll leave you with a glimpse of the difference a year has made in Lil Z’s life…

This is Lil Z in December 2012.

IMG_0224 She’d stopped eating in the previous months and had a nasogastric tube – that she hated. And she quickly learned to pull it out, which meant we were constantly going back to the hospital to have it put back in – a process that required three people to hold her down and bordered on abuse… She was having seizures regularly and the Queensland Ambulance Service were regular visitors to our house (including on Christmas Day). She was silent except when she was unhappy (which was regularly) and then she screamed – sometimes for hours. She didn’t like attention from people (other than a select few) and preferred to bounce in her chair in front of cartoons.  She kept her eyes closed a lot because her eyelashes grew inward and scratched her eyes. 

And this is the Lil Z of today…

IMG_3762

Her eyelashes have been fixed (she effectively had an eye lift) and she not only keeps her eyes open, but she looks around much more than she used to do. She’s quite sneaky about it though – she still rarely makes eye contact, but instead gives everyone quick glances to make sure she knows where they are in the room. She has a mickey button and gets all her nutrition, medication and fluids through it, which is so much better than either trying to force her to eat or the awful nasogastric tube. Best of all, she’s a much happier girl. She chats, she rolls and bum wiggles. She uses a few basic signs – mostly to demand bouncing, which is still her all time favourite activity. She smiles and squeals when she gets her way.  And she is happy to interact with pretty much anyone who will give her cuddles and bounces.

It’s not all easy sailing, of course. She’s come into her terrible twos and demands constant attention. If she doesn’t get her way she will have a tantrum, scratch her ears and pull out her hair. She’s well on her way to a bald spot on the back of her head. She is still struggling to manage her secretions and coughs, gags and vomits… a lot. And usually in the most inconvenient places. Or when I’ve just stepped out of the room.

Last night we had a photo shoot on the beach with a professional photographer. I’d been nervous all day about trying to have photos with Lil Z, who rarely cooperates when there is a camera present. But I didn’t need to worry. After some initial fussing, she smiled, cuddled and sometimes even looked in the right direction. Vegemite was having a ball, running around the beach and splashing through the pools left after the tide went out. And Lil Z was smiling and squealing, enjoying being held by QB. The photo shoot highlighted to me just how much life has improved for Lil Z in 2013.

And we have big plans for 2014. So watch this space – hopefully next year will be even better than this one…

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One response to “The difference a year makes

  1. So glad to hear of all the progress you and Lil Z have made this year – and Anya too.

    I hope you have a wonderful Christmas and a very happy new year building on that and all your other pursuits.

    Please could you let me have your new address (for next year!). I’ve a card for you here but have run out of time to get it to you – actually the same goes for the cards for the rest of the nct gang so the fact you live in Australia isn’t the main factor.

    Lots of love to you all
    from Jo, Chris, Tom and James (now 4!) xxxx

    Like

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