Sunday, 11 July 2010

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!


  1. Fabulous news! So glad for you all, especially after the tough time you've been having.
    Tell Maggie mine's a vodka and Diet Coke,

  2. Fab!!! Omeprazole rocks!! I've been on it for 12 years, every now and then a new doc tries to suggest that I should stop taking it, (I don't know whether its expensive?) and I fight them tooth and nail and they give in, so me & Maggie can start a save the Omeprazole fan club! I know its only baby steps, but I don't blame you for being chuffed, who wants to mountain climb anyway!!!

  3. What a great piece of news. Shame the people who should know what they're talking about don't seem to. Bloody typical!

    Thinking of you all the time and will be over in the 6 weeks' hols.

    Big kisses for everyone.

    Love Sal xxxxxx

  4. She must have heard my stern talking to that enough is enough already! Hurrah Maggie!!!! I'll be the first to hit the pub with you! Let the pounds pile on.....and lets give the doctors a good pounding! Sounds like pure negligence.....malpractice perhaps. I hate them.

    but I love you guys.....all of you!


  5. i wont pretend to not be angry at the failure of your nurses and doctors. that makes me very angry and sounds like they were more concerned with a conservative treatment, and refuse to admit that there is even the possibility that they could have been wrong.

    i am choosing at this point to think in positive terms and to look at the here and now. maggie is responding well and like you said, a routine and schedule seems to be settling in as well. for that i am more happy than you two can possibly know.

    i love all of you so much and it makes me tear up with joy to see the fantastic photos and to hear that things are shaping up for a none too soon visit to the pub! tell tom to keep his shirt on though.

    well, make sure to keep posting and sharing your thoughts and words with us.

    much love,

  6. Pub!!! xx Russell

  7. Hey, so glad life is getting a little easier, fingers crossed
    Rachel xxx