Monthly Archives: November 2009

ack.

Today I took Ginger to see the cleft surgeon for follow-up after her surgery. All very pleased, the lip is healing well.

Then we talked about scheduling the surgery for her palate. The surgeon said ‘the primary reason for this surgery is for her speech’. I said ‘well, and hopefully her feeding too.’ At which point the surgeon said ‘well, feeding and swallowing difficulties are usually caused by other factors, it’s unusual for surgery to the palate to make much difference if a child has problems with their swallow.’

Which left me somewhat surprised and considerably cheesed off. Looking back, I am not sure that anyone has ever explicitly said to us ‘Ginger’s feeding problems are caused by her cleft palate. When that has been corrected, we can hopefully start to give her some food orally and see how she copes with that.’ However, it has always been my understanding that Ginger’s unsafe swallow and her cleft palate are connected – I’m sure that’s how it was presented when we were first told she couldn’t safely feed orally and we would have to learn to feed with the NG tube, back when she was just a couple of weeks old. Certainly, since then, whenever I have mentioned to medical people that after Ginger’s surgery on her palate, we would start attempting oral feeding they have made agreeing ‘yes absolutely’ type noises.

So today it feels as if we have been told she may never feed orally (despite, now I think of it, the feeding clinic consultant saying he felt her outlook for feeding orally was good), and that she’ll always be enterally fed.

If food was only about nutrition, this wouldn’t be a problem. But it’s not. It’s one of life’s greatest pleasures. Eating together is how we build relationships and community. Going out for a meal on a date; a pub lunch on a friday with work; communion; family meals.

Not very impressed this evening.

(In case I don’t pop in again beforehand – just to let you know she’s going in again two weeks today for surgery to place her feeding tube directly into her stomach through the abdominal wall. Which at least means No More NG Tube. Which is A Very Good Thing Indeed. As long as the cough she is currently brewing doesn’t come to anything.)

Let them eat cake.

Today I delivered a banana loaf to a friend whose husband had a mammoth (and I mean mammoth – some 11 hours from going into anaesthetics to being out of recovery) heart op on Tuesday.

I’m sure I used to be the sort of person who, when friends were having a rough time, had many words of wisdom and empathy. I don’t know if it’s a product of my experiences over the last few years or what, but these days I find the words have completely gone, and all I can ever think of to do is make cake and thrust it at people in a sort of mute sympathy.

People seem quite happy with this arrangement!

Charity shop hilarity

So, yesterday I was in Oxfam, browsing the glassware and crockery, as is my wont. As I browsed I was thinking of my friend K, who has a very similar taste in 70s crockery (particularly coffee pots) to me. She also regularly browses charity shops in our town and often gets there before me.
Then I spotted a marvellous coffee pot. Really marvellous. She’d love it, and so do I.
As I was paying for it, in walks K.
“Ha!” I say, in an unchristian fashion, “I have just found a marvellous coffee pot. It’s wrapped and in my bag. Tee hee, I got there first.”
“Let’s have a look”, she says. I unwrap a corner so she can see the pattern.
“That was mine!” she says “I donated it a few weeks ago.”
While we dissolved into hysteria in a corner, I think the man working at the till was a bit concerned I was going to demand my money back, K was going to demand her coffee pot back, so she could just give it to me. But we decided that everyone (including Oxfam) was a winner in this situation and left it at that.