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Tuesday, January 15, 2013

Episode 6: Return of the William's Syndrome Dad

WOW! That time I really did take a long break. But, I'm back and hopefully will get back in to it. I've missed it if I'm honest, so I guess the experiment has some very non-scientific results.

Moving house, the London Olympics, E's mum being made redundant and getting a new job, E's mum starting new job, finding new nanny and finally Christmas have really wiped out the back end of 2012.

To ease myself back in, I thought I'd give that long awaited update on E.

E is a lovely little boy. He loves cuddles, but only on his terms, and one of his favourite things (excluding peppa pig) is bouncing on my tummy. He has gone mobile, crawling after his brother, and racing to the front door to greet new people. He can stand with support and cruise around the furniture, but shows no desire to walk just yet. He refuses to learn to sign but insists that you ask closed questions. In response "yeah" means yes and silence or a hand in the face means no.

We get masses of compliments about E, how cute and happy he is. These people are right, but somehow I find the compliments hard to take. I know this is because he has Williams, and I know they don't understand. No idea if it is my guilt at not telling them or just my fears of the long term issues that come with the cuteness...

Anyway, health wise, E has been doing OK with the odd interruption for coughs and colds, but no major Williams related issues. Well, that was right until December, when we had a cardio clinic. E has now been scanned and measured and poked and prodded (including MRI of his heart). The upshot is that he is likely to need surgery on his aorta. E has supra-valvular aortic stenosis (best described as a pinch point just above the valve).

This has come as a big smack in the face. One which I am not sure we were really expecting. Oh well, we find out the recommendation of the panel this week and until then E is getting extra cuddles and we are all celebrating Cs birthday!

Be back soon...

1 comment:

  1. Hope you're ok. This sounds tough.