This blog started as a way of telling Emily's story; as the last post was about her 16th Heart Day I think it's an ideal time to move on.

I'll be blogging here from now on and leaving this one be. I'll update on any heart related news (hopefully that will be few and far between as no news is usually good news) but otherwise come see me on the other side.

If you happen across this blog in search of someone with ALCAPA then feel free to read Em's story from the start, see how far she's come and then leave a comment or mail me. I'm always happy to be in touch with other families.

Take care

Update#1 21 July 2010

Emily is officially a GUCH! (Grown-Up Congenital Heart)

She had her final appointment at the Children's hospital yesterday and has been handed over into the care of the Adult team at the QE. It's a huge milestone and I felt a tad emotional leaving the hospital for the last time; they've been a massive part of our lives. We have much to be grateful to the Children's hospital for; they pulled her back from the edge when she was diagnosed and she survived, unscathed against all the odds. Thank you Dr Wright, Mr Sethia, Mr Brawn and your wonderful, dedicated staff.

We lost our lovely lifelong cardiologist Dr Wright last year - he was tempted away by a new life in New Zealand (and who could blame him?) so were feeling a little cast adrift but now we can make a new start with a new team.


Change is the law of life. And those who look only to the past or present are certain to miss the future." -John F. Kennedy

Update#2 24 August 2010

Emily picked up her GCSE results today. A good crop of A* to Cs and I'm inordinately pleased. Her attendance at school hasn't been fantastic over the years but the girl came good!

And now it appears that I suddenly have no school-age children; just students who are a drain on my finances and test my sanity. Bless 'em!

Update#3 11 October 2010

Our first GUCH appointment today. We saw Dr Sara Thorne at Selly Oak hospital. She was lovely -not a bit like I expected. I'm not sure what I expected; maybe that she'd have two heads or something!? It was just a quick 'hello' visit really - Em has been booked in for a load of baseline tests which incudes the dreaded MRI. That was the only bit she was unhappy with. If all is well we can be seen by the same team but at the outreach clinic at our hospital. I'm happy with that especially as this trip it took us 2 hours 10 minutes to travel the 55 miles to the hospital; the M6 seemingly, as usual just like a very big car park!

Update#4 2 August 2011
Well - almost a whole year with no updates. How good is that!?

This Saturday (which is unusual in itself) Em has a Myocardial viability scan at the QE in Birmingham. The scan will show how damaged Emily's heart muscle is. Before she was diagnosed she had a couple of heart attacks and the lack of blood flow to the muscle means she has areas of damage. How well her heart functions, particularly under stress depends on the extent of the damage. Fingers crossed the news will be good. Stress test, ECHO and the usual MOT in another couple of weeks.