Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Thursday, January 10, 2013

Have yourself a merry little christmas...

Oops. Sorry. It's been 6 weeks since my last update and there is lots to tell. Christmas, g-tube update, and general Charlie ridiculousness. Let's go.

Christmas: amazing. When you are the only grandchild on BOTH sides, have doting parents who are still slightly sympathetic about your heart condition, and an aunt and uncle who both have unlimited budgets when it comes to babies...well, it's a pretty good christmas, isn't it? Charlie got spoiled rotten. I couldn't begin to list all of the presents he got. On top of that, Christmas Day was the best day I think we've ever had with Charlie - he was in such a good mood (who wouldn't be?), played all morning, had a good nap, ate was lovely. Children really do make christmas so much fun again. I can't wait for next year and the year after, when things start getting really fun!

G-tube: our dietician (Louise) recommended we try Charlie on only clear fluids overnight (so, 700mls of PediaLite rather then formula) and see how he does, eating-wise. We just finished day two of what Matt and I are calling 'The Hunger Games' and its going better then I predicted, certainly. He's not miraculously eating 1000 calories a day or anything, but he is holding his own. Tomorrow we'll find out if/how much formula to reintroduce, and go from there. It's pretty cool, though, that we are working towards getting rid of the tube. Charlie is certainly hungrier and more willing to eat textured foods then before, which is nice. He also now has a bedtime snack!

General Charlie ridiculousness: he is talking up a storm these days. He loves to repeat anyone and anything, including family, friends, and random grocery store strangers. It's almost like having a very large parrot sometimes. And it's adorable. He's short, but I have a feeling we aren't going to be able to hold him back from much. Charlie is also developing his sense of humour quite a bit, slamming doors in people's faces and shouting 'bye!' at every opportunity. That's fun until you get a door in the face.

Other stuff: we had an appointment at SK in December, and it seemed generally hopeful. They've booked Charlie for a sedate echo in April, so that will give us more information about his hearts recovery, and they also took him off one of his medications (Lasix, the diuretic). It totally freaked us out that he was just 'done' with one if his meds, and I don't think Matt and I will react well if/when they take him off his heart medications.

Also, during that appointment Charlie was fitted with a Mic-Key button, which is supposed to be easier then the g-tube he has now. Unfortunately, it ended up being a terrible weekend of 'Mommy? Tube? Ow? Mommy?'. Annnnd then he tried to yank the new button out of his skin. Good times. So, back down to the hospital we went and the procedure was reversed. A very expensive, annoying mistake. :( But, Charlie is comfortable again and that's what's important.

That is the update from around here. Please keep Charlie in your thoughts, but even more so, one of our buddies named Wesley who is currently fighting brain cancer at our hospital. He needs your thoughts more the Charlie right now, and I'm sure Charlie is willing to lend his fans to Wesley to help him on his journey to good health.

Have Yourself A Merry Little Christmas


Have yourself a merry little Christmas,

Let your heart be light

From now on,

our troubles will be out of sight


Have yourself a merry little Christmas,

Make the Yule-tide gay,

From now on,

our troubles will be miles away.

Here we are as in olden days,

Happy golden days of yore.

Faithful friends who are dear to us

Gather near to us once more.

Through the years

We all will be together,

If the Fates allow

Hang a shining star upon the highest bough.

And have yourself A merry little Christmas now.

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