Monday, January 09, 2017

Grateful.

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!

Monday, December 26, 2016

Merry Christmas!



Well, Christmas Day has been and gone, and these two have had a wonderful time. We've had a busy week since they broke up from school - concerts, fun with friends, a hospital visit (only pacing clinic for Charlie - all is great, sats 92, he's grown another 5cm in 6mths and his pacemaker is working well!) and then a surprise couple of days away at Celtic Manor, where we had the poshest hotel room ever, tea with Willy Wonka and a meet and greet with Father Christmas! Then we went to visit Nanny, had some more friends to visit, a trip on a steam train to see Father Christmas and then the carol service at Gloucester Cathedral (at which a man gave Charlie £2 and said that hearing him singing the carols so beautifully had made his Christmas, and the lady in the row behind him said that he ought to apply for Britain's Got Talent! Charlie was very pleased - especially as his voice is slipping southwards very quickly, so he'll probably be singing the tenor part next year!)
Christmas Day we spent at home - other than a quick trip to the church to take some flowers to Will.
Nanny swept the board in the 'best surprise present' stakes as we managed to get a pair of teeny tiny Chinese hamsters from her home on the 23rd and the kids were none the wiser until they walked into the kitchen on Christmas morning!
Two very happy kids, and Flash and Sunny, as they're now called, have never had so much attention!
Lazy Boxing Day today, then off to my brother's tomorrow afternoon for the annual gathering of the clans.
Hope you've all had a lovely Christmas!

Friday, November 11, 2016

Birthday treat!


I forgot to mention that Charlie had a rather cool birthday treat last week - we booked him tickets for Alfie Boe and Michael Ball's 'Together' tour.
He even had a chance to meet and greet the two of them, which was a fab experience for him as he loves both of their voices. He had a great time chatting with them, and I think they were quite pleased to see him too - their normal fan base seemed to be ladies of a certain age, so I think it made a nice change for them to be giving tips on musical theatre performances, rather than fending off hugs and kisses!
The concert was fantastic - two powerhouses belting out some massive numbers, and we were right at the front!
It really was a once in a lifetime experience for Charlie, and I'm so glad we were able to get the tickets for him. :-)

Saturday, November 05, 2016

Happy Birthday Charlie!!



So. We have a teenager in the house.
I still don't quite know how that happened!
We've had a lovely day - Charlie was so pleased that his birthday fell on a Saturday, so he could open all his presents in a leisurely fashion, rather than tear through them at breakneck speed in time to catch the school bus.
He had so many fab presents, LOADS of money and was totally spoiled!
My brother and his family came over this morning to see him which was really nice too.
I'd booked a table at a steakhouse in Cardiff, and mentioned on the booking that it was a birthday celebration. Charlie was delighted when the manager brought him a birthday card and an extremely large fruity 'mocktail'!
We went to a firework display last night, but we always have a few fireworks in the back garden on Charlie's birthday too, so his friend Fi came over for some pizza and to watch the fireworks too.
We decided not to have a big birthday cake this year - opting instead for some DC Comics cupcakes.
They were yummy - even if there wasn't much room for the candles!
It really has been such a lovely day. I still can't believe our boy is 13 - a whole new era of his life has begun - one that we scarcely dared to dream might ever happen.
So Happy Birthday Charlie Boy. We love you so much and we are so very, very proud of you. xxx

Monday, October 10, 2016

Happy Birthday Rosie!

My gorgeous girl turned five today! Can't quite work out how that happened...
Here she is after school today, trying out the new scooter she had from Nanny.
Happy Birthday lovely girl - we love you and can't imagine life without you xxx