Thursday, February 16, 2017

Very proud of this boy....


(There should hopefully be some professional pictures coming soon, so will post them when I have them!)

Tuesday, February 14, 2017

Grandpa's Tie

Well, Charlie and Pete have just set off for the station on their journey to the House of Lords.
There's a smart dress code, which means they both have to wear ties.
I know I've said on here before that my Dad was a 'tie man'.
He'd have worn a tie to the beach if we'd let him. (In fact, I'm sure there's an old black and white photo somewhere of Dad at a church youth camp, playing football in shorts, with a sports jacket and tie...)
Anyway. When Dad died, Charlie chose a handful of Dad's ties, to keep until he was a big boy.
And this is one of them.
As I tied it for Charlie this morning, around the crisp white collar of his shirt, it brought back so many memories of Dad - all those years when I was a little girl, watching him knot his tie in the bathroom mirror.
He would be SO proud of how far his little Charlie-Boy has come.
And I know Chas feels like he's taking a bit of his Grandpa with him to the House of Lords today.

Sunday, February 12, 2017

Off to London

Well, Charlie's off to the House of Lords on Tuesday, for the premiere of the DVD he filmed back in October.
He and six other kids with single ventricle conditions made the short film to help raise awareness of what it's like to live with half a heart - how, even though you look 'normal', your energy levels can be much lower than those of your peers.
Obviously, being on camera was right up Charlie's street, and the finished product (we've had a sneak preview because Charlie did some post-filming voiceovers for it) is looking brilliant.
So Chas is off to the Big Smoke with Pete, and will be speaking, along with a couple of the other children.
The attached pic is a still from the film - I'll be sure to post a link to it once it's released (probably mid-next month after the Little Hearts Matter Open Day.)

Friday, January 20, 2017

Victorian Day

Today was a dress-up day at school for Rosie - all the kids dressed up as poor Victorians (specifically the Chartists - a subject which I studied to death at A Level and vowed never to think about ever again...)
She had a great day, and learned all about Victorian toys as well.
We have a quiet weekend ahead, thank goodness. It's been a fairly hectic week (not least because somebody saw fit to hack our PayPal account and spend £90-odd of our money on shoes...
So I've been running around filing fraud reports with the police, telling the shoe company not to deliver the shoes to the thieving so-and-so, and hassling PayPal to give us the money back!)
Charlie's working hard at the moment - he's off to the House of Lords next month - he's speaking at a Little Hearts Matter Event there, so he's in the middle of writing a speech, while recording voiceovers for a DVD he made with them last October half term.
He's also rehearsing for two different shows, preparing for a theatre exam, and has signed up for a week-long residential theatre summer school in the West End in August, which he's looking forward to already. (I'm quite jealous actually - it sounds fantastic, but it's only for people up to 21 so that rather rules me out!)
Anyway - that's all for now folks - have a great weekend! :-)

Monday, January 09, 2017


Well, we had Charlie's cardiology appointment. It should have been a year ago, but because of the long waiting lists it only came through for today.
But it was worth the wait!
What a fantabulous appointment! Possibly the best one we've ever had, and that's saying something, bearing in mind I don't think we've ever really had a bad one!
Charlie's consultant was virtually doing a happy dance - he's usually very cautious and tends to worry a lot, but he just kept saying that Charlie was exceptional, amazing, unbelievable...
His pacemaker is working well, obs are all spot on and most importantly, his heart function is brilliant!
The consultant hasn't changed any of his medications which is great - I was fully expecting to have them increased after the amount of growing he's done in the last two years, but everything is working so well, there was no need to make any changes.
We don't go back to Cardiology for another year (which will probably end up as nearly two years again by the time we work our way back up the list!)
The consultant has also just booked Charlie to speak at a big medical conference in June for sonographers, obstetricians, fetal medicine doctors etc in Wales.
He wants Charlie to tell all the medics - many of whom only see children with HLHS on ultrasound scans or only at the very start of their journey - about his life with half a heart, and to demonstrate that although sometimes a bit complicated, life with a single ventricle is definitely a life worth living.
He's going to list him on the programmes as 'Guest Lecturer', so needless to say, Chas is chuffed to bits!
So, all in all, a rather good day!
I don't think I'll ever get past the pre-appointment panic, but we are so thankful to our fantastic hospital team, and SO grateful that Charlie continues to do so well.
Keep up the good work Chas. We love you xxx

Sunday, January 08, 2017

A rare, half-decent pic of the men in my life!

Happy New Year everybody - here's hoping 2017 turns out to be a great one.
We're off to cardiology clinic in the morning - 2017 will be even better once Charlie gets the all-clear!