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

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