Looking Up. A Bit.

Maybe it's safe to count our chickens.

For the past week, since last Sunday, Maggie has been sleeping all the way through the night. From 8pm-ish to around 6.30am.

Even better - much better: she's been keeping all of her feeds down. She's barely been sick at all. This, as you will know, is completely unheard of.

It deserves a massive hurrah!

This is what I wrote in a recent post:

"What we did, from a suggestion of one of the women at Quidenham, is increase Maggie’s omeprazole – the medication she takes to help keep her reflux in check. It turns out she was on the very lowest dose. We increased it and the consultants agreed to increase it. But they stayed strangely mute when asked whether if we’d have increased the medication earlier – months earlier – she’d have put weight on earlier.

At around the same time, however, she developed a cold and a very bad cough. Which she still has. It causes her to vomit. So we’ve yet to see whether increasing her medication will work.

If it does work, we’ll be extremely angry. Because it could have helped Maggie’s growth and development months ago."

It looks like it's worked. So we're extremely angry. And even angrier after we heard last week that Julia, a community nurse who does a great job of keeping an eye on Maggie (and us), apparently wanted to increase the medication earlier but was told not to. Presumably by Maggie's consultant. We will, of course, be getting to the bottom of this.

The downside of Maggie sleeping through the night is that she misses a feed. So we have to make it up through 'snacks' and increased dosage throughout the day. She desperately needs to put the weight on, remember?

There are, however, many upsides:

She's sleeping through the night because she's keeping her food down. More sleep equals better development. More sleep also equals a much happier and more responsive Maggie. She still cries quite a bit but she doesn't howl all the time. She isn't so distressed, so fucking miserable.

A happier Maggie means a happier us. Which means a happier Maggie. It goes round and round.

In a nutshell: the increase in medication appears to have worked. She sleeps much better and is much happier and will hopefully put on weight. (Things she could have been doing months ago. During those utterly crucial months.)

So Maggie's happier and we're happier. But before we get all hurrah about this: she's still a very clingy, noisy baby that constantly wants to be held (which is not surprising given that we had to hold her all the time when we fed her to keep her reflux in check which maybe we wouldn't have had to do had they increased her medication ages ago and... well, you see how this goes, how everything can be linked to the crappy care she's received so far).

A quick aside: her dietician (a trained NHS dietician who gets paid for being a dietician) said to us, after she'd failed to keep Maggie's vomiting and reflux and growth in check: "I'm all out of ideas."

All out of ideas. Fucking hell. I'm going to try that on one of my clients when I can't be arsed to do my fucking job properly: just ring them up and say: I'm all out of ideas. And they'll just say: Oh, okay, thanks.

Back to Maggie.

She still scissors her legs and doesn't bend her arms properly. She's still far too floppy and still has poor head control. She still hates going in the car or the pushchair. If we could crack the car and pushchair thing we'd be laughing. Well, smiling at least.

On Saturday we did something very normal: we went round to our friends Chris and Marie-Claire's house for a barbecue. It helped, of course, that they're lovely, accommodating people but it was especially good because Maggie was good. She got upset a bit and she had to be held a lot of the time but... she wasn't a complete fucking nightmare. And, crucially, we didn't think, before we went round, that it was going to be horrible. We hoped, because she'd been so much better, that it would be okay. And it was. More than okay.

I mention that because it's a step towards us getting our lives back. I mean, it's not as if we went mountain climbing or scuba diving every weekend. In fact, all we used to do was sit in the pub (oh, but it was great). But at least we left the house. A lot. With Maggie the way she is now, we feel as though we can do that more often.

And maybe, if she gets to be a really good girl, we can take her to the pub. What a fantastic hurrah that would be!