No Thanks From The Loading Bay Ranks *

A photograph of Maggie, taken on August 14th. I like it a great deal not just because she looks peaceful and beautiful but because I remember how this was one of the very few occasions where she got herself to sleep without assistance. She tossed and turned for a bit, and cried, but eventually got there. It was a significant moment and one that hasn't been repeated.

For the past week or so she's been struggling a great deal with a cold. She has trouble breathing and swallowing and her co-ordination is not what it should be. So with her airways blocked, and all that extra phlegm, she's been sleeping very badly. Lots of snorting and tossing and turning - and that's when she's actually asleep. Every night has been a trial. Shannon and I have hardly slept and we're both really feeling it. Shannon more so than me because she's done most of the night care.

At the same time, however, some things are looking good. She seems to be more alert, more with it. She's doing good things with her movements, from head control to reaching out. The physiotherapy people, and the people from Portage, are generally impressed with her. As are the lovely people at Quidenham who tell us every time that they see improvement. She seems a little happier too and maybe that's because she's getting better at coping with all the shit that goes on inside.

And yet - curses - she's still not gaining weight. So her head and brain aren't growing. We were told the other week that this may not just be due to the fact that she throws up a lot. It could also be because she sleeps very poorly. With her snorting and constant irritations she's almost always in light sleep mode, never really reaching that all-important deep sleep. Which is why, under the instructions of the impressive Dr Bem, they're looking at ways of getting her there. Nose clips? Nasal drops? A different sleeping arrangement in her bed?

I mentioned Dr Bem in a previous post: she's Maggie's new consultant. She seems to be very on the ball and very interested in Maggie's care and development. Get this: she actually does stuff and recommends stuff without us having to constantly fucking bang on about it. She's a world away from our previous consultant. So that's a real bonus. It makes us very happy knowing that Maggie has got someone who is genuinely looking out for her. A round of applause for Dr Bem.

I've just read this back and noticed that I used the phrase 'a great deal' twice. Sigh.

Maggie's now on a new feed which contains significantly more calories than her previous feed. It comes ready-made in bottles so there isn't all the pissing about with powder. That's a good thing. The bad thing is that what we've had so far has been vanilla flavoured. It turns my stomach. Especially because, of course, Maggie throws a lot of it back up. So we've been covered in it. My crotch almost always smells of vanilla. We can change it though (the feed, not my crotch) to either strawberry or banana. Fucking hell. What about chocolate or coffee? Or what about, instead, they stop messing about with flavours and just make it neutral - it's not McDonalds.

It's late and Shannon's gone to bed and I'm tapping this out because I always feel a bit guilty when I don't update this blog. Forgive me if I ramble a bit.

We had a great birthday party thing for the girls. Here's a picture of the badges we had made in celebration. Good huh? The idea was that every guest would be given a badge. But we forgot until most of the guests had left. So if you want one - even if you weren't at the party - do let us know.

Loads of people turned up which was, of course, a relief. It made us very happy that so many people did. And everyone brought the girls fabulous gifts.

(By the way, if you're one of those people and you're waiting for your gilt-edged, handwritten thank you card, I can assure you that you will get one. That's because Shannon is very good at things like that. If it were me, you'd get nothing. What do you want, medals?)

But it really did make us very happy. It was a significant milestone and it was lovely to have so many people sharing it with us. I can't wait until next year's - we're going to book a room in a pub. With strippers and everything.

During the party, Alice got lost in the crowd, handed round to whoever fancied holding her. She was, as always, as good as gold. As was Maggie. In fact, she was beautifully behaved. I imagine that most people left wondering why we're always on here moaning about how difficult she is. They were utterly delightful, both of them.

But wait. Let's not get carried away with good news. I've got my obligatory twatting about at the hospital story to tell.

You recall that every time we have anything to do with the hospital there's always a problem? That they always somehow manage to make things more difficult for us rather than easier for us? So naturally, every time we go up there we're always hoping that just this once things will go smoothly.

I took Maggie up for a barium swallow x-ray thing whereby they fill her with some kind of chalky liquid substance (which I suppose is the barium bit) and then x-ray her to see if there are incidences of reflux. So, they said, have you brought her bottle with you so that she can take the barium as she's normally fed? No, I said, because she's not fed with a bottle, she's fed through a tube - as must be mentioned within her extensive notes. There's no mention of that, they said. Typical, I said, bloody typical. (I didn't say 'bloody' of course because the big babies at the hospital have a complete zero tolerance policy on any type of swearing, however mild. Me, I've always thought that instead of having an absolute zero tolerance policy on swearing they should get some common sense and deal with each situation as it occurs. Perhaps they could occasionally ask themselves if there's a reason why this obviously frustrated person at his wits' end is getting agitated? Perhaps they should act like proper fucking grown ups and stop being so precious and silly and demanding of special treatment and attention simply because they work in a hospital.) I'm detecting a negative tone, said the radiology fella. Well, I said, let me explain to you how every time we come to this place there's always - always - a problem. That's not my fault, he said, it's down to the consultant or the consultant's secretary who didn't mention in the notes that blah, blah, blah and so it's not our fault and maybe you should take it up with them. Why should I take it up with anybody? I said. Why is that something I have to worry about? I said.

And on it went for a bit with them getting very defensive and pointing the finger at everyone in the hospital but themselves. It was like they were asking me to understand just how incompetent and how bad basic communication is up there. I hate how they always expect us to be sympathetic to the problems they have: someone's been off, she only works Mondays, we're short-staffed, the printer broke, the computers went down, the cleaner tipped her bucket over. It's pathetic.

Let's be clear: it wasn't so much that on this occasion it was such a massive problem. It was that it was a problem at all. It was that, yet again, we were made to think that we just can't trust the hospital to do anything right. It's very depressing and very frustrating.

But Dr Bem. She's NHS. And she's great. So there's hope yet.

* Thinking of titles for blog posts is always a bit of a chore. So from now on mine will be taken from lyrics by The Fall. That should put a few people off.