So look, here’s me again, but with a new name and things.
Sorry I’ve disappeared so badly. I’ve been on facebook and finding that the little status updates are just about my level at the moment. But the wiblog has been feeling neglected (it told me) so I am thinking maybe I’ll roll up here every now and again and wibble a few lines at you all. But probably not particularly long or detailed wibblings.
Let’s see how it goes.
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.)
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!
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.
Getting back into the habit of saying absolutely nothing on the internet. I’ve been trying to decide whether to fill you in on the last few months or just pretend we were never away and plough back in.
I think it’s going to be the latter, but I really should mention that Ginger finally had her cleft lip operation nearly five weeks ago, and now has a whole new look. Photos at some point. Oh, and Groover has started school.
Lots of other things too, but those are probably the main news items.
There’s been a bit (a bit?!) of a lull since – ahem – July. Sorry about that.
Last night mr b and I were looking through some old posts (mainly looking for some photos) and commenting that it’s nice to look back at posts from the last few years. So I am now under instruction to start blogging again.
Which of course means I can’t think of anything to write…
But didn’t, because I am either chicken or too polite.
1. On bumping into a friend I hadn’t seen for a while, with his two boys, the elder of whom is about Groover’s age….
He said: Aren’t you finding them [his son & groover] just lovely at the moment? Sam’s so sensible now, I can just leave him to get on with things as I know he’ll amuse himself, and do as he’s told.
I said: No.
I wanted to say: No. That’s not normal, your child is a freak.
2. In an appointment with a consultant geneticist. He explained that when a child has a lot of characteristics/problems which might indicate a syndrome, but they’re not sure what, they put a list of that child’s stuff into a database and see what it comes up with.
I wanted to say: So, to be a consultant geneticist, you basically have to be able to google?
3. (I should note that between incidents 2 and 3, I had a phone conversation which put me in a Very Bad Mood Indeed.) This was to the woman in front of us in a supermarket queue. Luckily for her mr b was with me as a calming influence.
I wanted to say: Excuse me, but in what universe is it acceptable behaviour for you to deposit your boyfriend empty handed in the queue for the till while you go and do your shopping, so you arrive with your basket and give it to him, effectively queue-jumping in front on loads of other people? Also, stop talking in a loud voice about how you’re still having an adrenalin rush because you just jumped out of a plane. We don’t care. Go back and do it again without the parachute and I might be a little bit impressed.
I told you I was grumpy.
Groover has just put mr b on ‘The Step’ for eating a biscuit before tea.
Mr b is obediently sitting there waiting for the overn timer to go off. (I have relaxed my usual rule, where you sit on the step for as many minutes as years of your age….)
“If you make a mistake with a 12-bore, it’s not going to be a small mistake.”
Bloggable things have happened; I just haven’t told you about them!
Last weekend we had a few days at centreparcs which was lovely. Lots of hanging about in the swimming pool, which led to lots of conversations about Ginger with interested children. I am really quite good at explaining cleft lip & palate, and ng feeding, to small children, if I say so myself…. this was the best conversation though:
I was being interrogated by a four-year-old boy about what was on Ginger’s face (her tube) and why her lip and nose look different. A girl of about eight, evidently the boy’s sister, came over, and (prompted I suspect by their mother) said “Is my brother being rude?”
Me: No, we’re just talking about Ginger, and that’s fine. He’s been asking me why she looks different and I’ve been explaining.
Her: Well, if he’s being rude, just tell him to go away.
(At this point we are joined by another sister, aged about six.)
Me: No, that’s fine. It’s okay to ask, Ginger does look different and it’s silly to pretend she doesn’t. It’s much better to ask.
The boy continues to interrogate me as the girls look on.
8-year-old girl: You know, you’re right. She does look different, because no-one else in this swimming pool has such a beautiful smile.
Can’t argue with that.