Monday, 28 July 2014

once more with feeling

I think that you have to be a special kind of person to elect to work with life-limited children.

We've just had a check-in with N's Paediatric Consultant - the one who is the case lead, that co-ordinates all the care that she receives. He checked her over, we talked about the Neuromuscular Clinic appointment at Bristol last month; we told him that we have, this morning, received acknowledgement from Great Ormond Street that they will be sending us out an appointment; and then he had to look me in the eye and say that even if GOS *do* find something, it'll pretty much certainly be untreatable.*

He must do this every single day, several times a day - his speciality is neuromuscular stuff. He's still engaged, kind, informative and really, really good with N.

I knew what he was going to say when we went in there. We both did. It didn't make it any easier though.

I am so grateful to all the people who work with N and with us. They are truly amazing on all sorts of levels and although it's all shit, the fact that they are so good makes it very slightly less so.

We go back again in six months, to do the same thing again.

* unless there's something they can do with Co-Enzyme Q, which is a stonkingly small possibility.

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