...And the optic nerve too

I just wanted to add a little bit to Paul's post about the great news about Maggie's vision...and why it really is really great news.

Months ago, when Maggie was still in the hospital, the early eye examinations revealed that although the structure of her eye was fine - that she could probably technically see - the optic nerve connecting her eye to her brain was pale. This can happen in cases of prematurity, but it also occurs in cases of brain damage - and given that Maggie wasn't yet fixing or following on any objects, including us, we were kind of warned that the latter could be the case. And what would that mean? That the worst case scenario was that Maggie would 'see' things but she wouldn't understand what they were, she wouldn't remember them, she wouldn't be able to make any sense of them. So there really wouldn't be much point of seeing anyway. And it used to break my heart time and time again in the hospital to think that she was looking at me, seeing me, only to move my head out of her line of sight and she would just continue looking in the exact way. Would I have a little baby that didn't know from just looking at me that I was her mum?

Needless to say, I've been worried about those optic nerves and what they meant for a long time. At the appointment last week the consultant said that he wasn't even going to put Maggie through the eye drops and tests because he felt confident just seeing her look around the room at all the different people and all their different movements and their tester toys that she knew what she was seeing, that she was definitely taking it all in.

Of course they had to add in that her understanding could be delayed, slower, what have you but really, yet again, it's just about Maggie being so much better than they thought she would be nine months ago, five months ago, three months ago. She's a bloody superstar - who now smiles right at us.

Looking Forward: The Eyes Have It

The chickens have been counted.

Maggie has been keeping her food down really well. She's hardly vomited at all. Except when she's had a cough. And even then it was a minimal amount.

She's also continuing to sleep through the night. She wakes early though: around 6am. Still, it's a vast improvement on what was happening before.

She's happier. Much happier. Which makes her more responsive and easier to deal with.

And here's a thing:

We took her to have her eyes tested last Monday. We knew she could see. But given the way she acts, combined with her squints, we worried that she couldn't see too well.

As it turns out, she can see very well indeed. Which means all sorts of good things in terms of her future development and learning.

Actually, I'm being a bit too laid back about this.

We were, of course, absolutely over the moon. Really, really happy.

It's another positive step forward. For her and for us.

And I have to say that although I always seem to be moaning about the NHS and the consultants, the doctors who examined Maggie's eyes were great. Not just because they were the bearers of good news but because they communicated well, they offered good advice and they were extremely professional and friendly throughout.

So she can see. She's keeping her food down. And she's sleeping through the night.

It just gets better and better.

More soon.

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!

At last, from Shannon

I've been more a follower of this blog than actually writing it...something I'd like to remedy, and regularly. But if you're reading this, you probably know what I'm like, so we'll see what happens.

The thing is, I've been finding it hard - overwhelming, actually - to get anything done that isn't what's immediately needed for Maggie and Alice, because that alone is so time-consuming and stressful and difficult to do. 7am-9pm, with probably a 30 minute slot when they're both either asleep or happy enough to be left alone for a little bit. We eat dinner, it's 10pm, tidy up a bit, and it's 11pm. Go to bed and fall asleep, it's 12am - with Maggie waking around 2am to be fed, back in bed for 4am. We haven't had a stretch of unbroken sleep longer than three hours in weeks and weeks, months. And it's really starting to take its toll - I didn't realise how much until Maggie slept through one night and I got six hours straight. And I felt so much better for it - more positive, less vague and teary, more capable, just more human.

Because there's so much that needs to be done that isn't getting done - writing/calling/emailling people, sorting appointments/sleep systems/equipment, sorting going back to work, sorting possible childcare, sorting the house, shopping etc etc etc. So much that I just feel paralysed and get nothing sorted, not even the stupidest, slightest thing like having bloody food in the house. What to have for dinner? I can't think what. I really can't - I just draw a blank. Paul's so much better with this than me, even though he's got even more on his plate - it must be really fucking annoying to have me flake out like this all the time. I'm really sorry to everyone that's waiting to hear from me - I've just been overwhelmed by it all.

It's been a really hard month, six weeks. Maggie's been ill nearly constantly - starting with vomiting old blood that could have been gastroenteritis or esophagitis from her reflux. She had that twice and as soon as it passed she got a cough - sounds minor enough except that for Maggie a cough triggers more vomiting, which we didn't really think possible. Then she got a stomach bug - more vomiting and a week and a half of diarrhea that required rehydration treatment because it was combined with the vomiting. I've spent hours and hours at the hospital with her, each time leaving with not much more than a hopeful shrug that things would get better.

She's been losing weight when we so desperately need her to gain it - it makes me feel so helpless and frightened to see half of her food pour out of her mouth, and nose, knowing that it's stopping her from gaining weight, stopping her from getting the nutrition her brain urgently needs. And, unsurprisingly, she's been so unhappy, constantly tired and upset - which puts a stop to her physiotherapy, speech therapy etc. It's very wearing, an unhappy Maggie - it's also been really hot, which doesn't help. She was sleeping in just her nappy and I found it really upsetting to see her like this - she's so thin and stretched, with thin and stretched arms and legs. And it was rotten, rotten luck that she was at her worst this past week when Louie and Isaac were down. Luckily Alice was there to save the day as much as she could and salvage their opinion of their little sisters - completely smitten by Isaac and Louie and smiles all round.

But maybe, maybe, Maggie's finally on the mend. She slept through until 5am a few nights back, which we thought was an indicator of her getting ill again because that's the only reason she's slept that long before. But then she did it again - and woke up really happy and smiley. And she wasn't sick at all - it just stopped. Of course, a big part of me worries that this means there's something else going wrong that we just don't know about yet - how can it just stop? After so long of being so sick with so many feeds? She slept until 7.30am yesterday morning, and again today. One of our carers said that it could be just complete exhaustion from being so ill for so long...I hope it's more than that. I hope Maggie's finally turning a corner, getting on top of all the dreadful things her little body keeps getting thrown at it. She deserves a bit of peace and happiness, my poor little girl.

* Photographs of our week with Louie and Isaac. You'll note that in these photos Alice is wearing the greatest T-shirts in the world. The fact that they make her look like a boy is beside the point. They're the greatest T-shirts in the world because they have Spider-Man on them. You should have a T-shirt as good...

And isn't it lovely to finally have a post from Shannon? Give her a big hurrah and hugs!

Maggie and Alice and Shannon

A few pictures of Alice eating her first ever Farley's Rusk. It's the start of the slippery slope to obesity.

And a couple of pictures of Maggie and Shannon, taken at the beautiful Rosary Road cemetery here in Norwich. More of which can be seen here: Cemetery Pics.

Click the pic to see the pics:

At Last, A New Post

One of the consequences of having babies at a later age is that you get tired quicker. And things start to ache more.

One of the consequences of having a disabled baby at a later age is that your rotator cuff really fucks up. So much so that you can’t even type, let alone haul babies around.

Hence, in part, the recent silence.

It’s still fucked, by the way, my rotator cuff. I’m seeing an osteopath and everything. Spending my own money too. Which tells you a bit about how much it hurts and how much I want to avoid going through the fucking NHS. If I left it with them I’d probably end up having my arm amputated. In 2019, when they finally got round to seeing me.

Anyway.

There’s been loads happening here. Probably far too much for me to remember. Which is why I’m going to do this post in chunks, rather than attempt to construct the usual easy-to-read narrative that I know you all love and appreciate. Plus, it’ll allow me to give my rotator cuff appropriate rests.

Rotator cuff. It’s like something you’d expect robots to have.

First things first is that we’ve recently had visitors, as you’ll see from the photographs in the previous post. Shannon’s mum and dad (Grammy and Grandpa) followed by our friends Kali and Marlisa.

It was great having them here. We like having visitors. It makes things a little easier for us and it reminds us that there’s a world outside of all the crap we have to deal with. And it’s good to have people – people we like, people we’re close to – telling us that we’re doing a good job. It’s particularly good to see the way they react to Maggie, especially when they first see her: No, she’s not this desperately damaged kid.

Except that she is, of course. But we’re going to try to mend her a little bit.

One of the things that Marlisa said, that Shannon mentioned to me after she’d left, is that this blog, for all the good things about it, doesn’t get across the amount of love there is in this house. Especially the love there is towards Maggie.

And there is a great deal of love, for both girls. We adore them.

But the thing is, Maggie can be a massive pain in the arse. And she’s been more of a pain in the arse these past few weeks than she normally is. On account of her incessant vomiting.

She had big problems coughing up brown bile – or what the consultant called ‘coffee granules’. Twat. It was blood. Probably a dose of gastroenteritis. Or it could have been the wear and tear on her stomach from all the reflux.

So there she was coughing up brown stuff and vomiting up her milk during every single feed. Very worrying. Because one thing that she needs to get sorted is putting weight on. She’s far too small.

These first two years, as with all babies, are crucial. If she stays small, her brain stays small. She desperately needs to pile the weight on so that her tiny brain develops better. This is, I stress, absolutely vital. We’ve got just over a year to get on top of it.

And given all that, you’d imagine that Maggie’s highly-paid, highly-intelligent consultants would be on top of it, doing everything they can to give her the start in life that she both needs and deserves.

But of course they’re not. What we got – in a nutshell – was the usual fucking about. The usual half-hearted stabs at solving the problems. The usual guesswork instead of expert opinion. The usual acting when we demanded they act, rather than acting off their own back. The usual childish defensiveness when questioned. The usual haplessness and gormlessness that we’ve come to expect from them and the NHS.

So rather than these highly-paid, Friday afternoon golf players doing anything for Maggie, we had to rely, again, on the good sense and attentiveness of the lovely people at Quidenham. Who suggest things, who ask questions, who obviously have Maggie’s best interests at heart. If I was the kind of lunatic who believed in God, I’d thank God for them.

She’s there, Maggie, coughing up brown stuff and is barely looked at by the consultant. He told us to bring her back on Friday afternoon. But on Friday morning we got a call from one of his minions telling us that he’s cancelled the appointment and can we bring her in on Monday instead? Is this because he thinks it’s right for Maggie or because it’s convenient for him? I asked.

At no point did she, or anyone else, actually ask how Maggie was. She could have drowned in her own blood for all they knew.

Dramatic? Honestly, you should try living with the endless frustration of having to rely on these people. They’re not a help, they’re a hindrance. Yet we have to keep deferring to them because… well, because we need the reassurance that we’re doing the right thing for Maggie.

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.

Here’s some good news:

As each day passes she gets brighter and a little happier. She smiles, she fixes and follows and she responds to all the appropriate stimuli. She’s not there yet though. She still puts on her thousand yard stare and she’s still boss-eyed.

But we think she can see quite well. She might have a problem with focusing on distant objects but overall she manages to catch most things. We were in the back of a taxi last week and we noticed, for the first time, her eyes properly darting to catch everything that flashed past. And in the pitch dark, when we’re sitting feeding her in the middle of the night, she can quite clearly see what we can.

She is, in many ways, an absolute delight. She’s very cute and she’s got the best smile. And she’s started to laugh too, when I bite her feet, albeit in a bit of an odd way. She loves music and she loves being jiggled around and played with. And she really loves me and Shannon. A bit too much perhaps. She is, if nothing else, a very clingy baby: only me and Shannon will do. Which is a pain. Shut up Maggie! Just lie there for a bit! Leave us alone!

She’s still very noisy. She still doesn’t sleep too well. She still hates the pushchair and she still hates the car seat. So going out is always a joy.

Physically she’s making progress in some areas and not doing so well in others. She still scissors her legs. She still points her feet down when she tries to stand – they need to be flat. She’s still a bit too floppy. And yet she’s also a bit too stiff in her arms and thighs. She still twists her head to one side and needs to be encouraged to look the other way.

But she’s showing all the signs of wanting to crawl – and crawl properly - which is more than her sister is.

On top of all that: we’re struggling to cope with it all.

We don’t get enough support. We don’t get enough advice. We don’t get enough of a break. It’s just relentless. Everything about our lives is to do with Maggie and her needs. It can get extremely wearing.

And we’re struggling with the sadness of it all. It isn’t fair and we haven’t, despite what we tell ourselves, come to terms with that. We know it isn’t fair because Alice is so perfect in every way and there’s no reason to suppose that Maggie wouldn’t have been just the same. This could have been really easy and happy.

Shannon is struggling because it’s never-ending. All day long and all night long it’s about the girls, about Maggie. She’s all-consuming. Me, at least I get a bit of a break from it through work. Shannon doesn’t get that break.

(Shannon, by the way, is the best person to talk about this. I don’t want to put words in her mouth.)

Me, I’m struggling with worrying a bit about my age. What it means for me and what it means for Maggie. In the dark, as I’m sat there with a screaming, vomiting Maggie I do despair that this is how it’s going to be for the rest of my life. Obviously she’s not going to be a baby but she’s always going to need care, will always be demanding.

When she turns 18 I’ll be 60. Fucking hell.

So, effectively, the rest of my decent adult years will be spent caring for a disabled daughter. I’d love to be able to say that I’m okay about that. But I’m not. Not really. I’d like to have a life too. One that goes beyond me pissing about on Twitter because I think it’s the closest thing I’ve got to a normal life. In one hand Maggie, in the other hand my iPhone.

Another thing about that is that when I get older I’ll be less able to cope with Maggie. Maybe she’ll have to be looked after by support groups or helpers or people within the disabled ‘community’.

Over my dead body.

Recently I seem to have seen more disabled people than I have in my entire life. This is partly due to the fact that I’m currently writing a website for a disabled self-advocacy group. A group run by people with learning difficulties for people with learning difficulties. So I’ve had to immerse myself in their world: reading case studies, sorting through photographs, meeting them.

On paper, it all sounds great. Disabled people empowering themselves and trying to live as normal lives as possible. Good for them. But as I’ve said before, I find it all very strange and very sad. Because try as they might, they don’t exist in our world. They exist in their own twilight world.

I attended a meeting earlier this week and there were loads of them there. They were, of course, all nice enough and coping well and seemingly quite happy. But all I kept thinking as I looked at them was which one of them Maggie would be closest too when she got older. So then I began to despise them a bit.

I was chatting to this bloke in a wheelchair who couldn’t move his arms and legs properly and who was obviously a bit backwards, as they used to say. I just became overwhelmed with how sad it was that he wasn’t really a part of our world. Sad about everything that he was missing out on. Because it’s great in our world. It’s great to be able-bodied and intelligent, and to be able to communicate properly and not be patronised by well-meaning clowns. Nor pitied by self-pitying cunts like me.

Fucking disabled people. I’m sick of seeing them and I’m sick of having to think about them.

Maggie stays in our world, with us.

I was singing ‘Daisy Daisy’ to her the other day, as ‘Maggie Maggie’, and I couldn’t get past the part about it not being a stylish carriage. Because it made me think of her future life and how she’ll never quite live like a normal little girl or a normal young woman. That she’ll most likely never have a boyfriend or go out dancing or get married or have children. 

It’s a bastard, it really is.

Happy Father's Day!

It's been a really difficult time and there's loads and loads we need to catch up on here but first things first - and I can't think of anything more firster than wishing my Paul a very happy Father's Day. He is, quite simply, the best there is - now five times over. Maggie and Alice, and Tom and Louie and Isaac, are very lucky kids to have such an amazing, loving dad.

Hurrah for Paul!!

Grammy and Grandpa, Kali and Marlisa

There's so much going on at the moment. Maggie's been ill. I'm currently swamped with work. Shannon's swamped with babies.

As you may know, we had lovely visits recently from Shannon's parents. Followed closely by visits from our friends Kali and Marlisa.

Here are pictures of those visits. Words later.

Click to see the gallery:

Quidenham

We dropped Maggie off for a few days' stay at Quidenham this afternoon.

We really miss her.

All The Way From the USA

We've got Shannon's parents with us at the moment. It's really lovely having them here. They're marvellous with the girls and I think it's obvious that the girls really love them. Some solid bonding stuff going on!

That sort of explains the lack of posts recently. It's been very busy.

Hopefully Shannon will write something soon. Particularly about Alice's first trip on the train. To the seaside. Which I missed. And really regret missing.

What a fucking idiot I am.

But never mind eh?

In a nutshell: we're still having all the usual crying/puschair/car seat/feeding/vomiting problems. But overall - more than overall - I'd say that Maggie is making fantastic progress. Every day she's a little more alert and bright.

But, as always, we have to stay on the ground a bit about that. She's still not showing any signs of being able to feed properly. And that, right there, is all the indication we need that there's something not right going on in her brain.

Like we didn't know.

Alice. Well, Alice is thriving and developing in the most beautiful way. And she's still as good as gold.

We've got some lovely, proper photos to post - but in the meantime here's a selection of pictures taken with the crappy iPhone camera:

First Love

In lieu of a new post about Maggie and Alice, why not have a look at my new music blog? I write it because I haven't got enough on my plate. And because it's also a real distraction.

Click the box:

Downs. No Ups.

It's been a very tough week this past week. The progress we seemed to have made turned out not to be progress at all: she's now as bad in her pushchair and the car as she always was. And her sleep is back to being very erratic too.

She's very demanding and very difficult to manage. She's also very noisy and nothing seems to please or placate her. We can't go out with her and she doesn't sleep when we stay in. So there's hardly a break from her, hardly a break from it.

Unsurprisingly, Shannon and I have been quite down recently. I know that it often appears that we're coping very well and making the best of it, but I think we're reaching the end of that. It's just getting to be too much.

It really is quite miserable.

Ups. And Downs.

It's been, relatively speaking, a fairly good week for Maggie. But perhaps not so great for us. Very stressful and tiring. And sad, too.

The week started badly with Maggie picking up a dose of RSV at Quidenham. Never heard of it? Neither had I. But here it is: RSV.

We'd noticed that she was a bit snuffly in the morning so decided to take her up to the Children's Assessment Unit (at the hospital) that evening. We rang in the afternoon to tell them we'd be there at 5.30pm to fit with her tight feeding schedule. We arrived just after 5.30pm. We left over three hours later, with both Maggie and Alice tired, hungry and very unhappy. Almost three hours of standing around while being told that a doctor would see us soon.

When he finally arrived he took a swab, gave us some nose drops and told us to keep an eye on her. The bloke next door could have told us that. And he'd have been a bit quicker about it too.

The good part of this week is that we've been getting out and about more. Nowhere special, just trips out in the car and with the pushchair. We went to the city on Tuesday and, for the first time ever, Maggie didn't get hysterical. In fact, she seemed quite happy and even fell asleep in the pushchair. I know that may sound like something minor but, really, it's massively significant. We were really happy.

(We were also happy that day because I picked up a copy of the new Fall album which, I can guarantee, is better than anything you've heard this past year. These past two years.)

Mind you, we've been out a few more times this week and those trips weren't as successful. But still better than they used to be. I think we should go out somewhere every day, even if it's only to the supermarket - so that she gets used to the car and the pushchair. So that she gets used to normal life.

We had another, similar, triumph when, during the course of being fed, Maggie fell asleep in her chair. Again, it sounds like a minor thing, but it's equally significant. She normally manages ten minutes in that chair before howling and arching. It just proves that it is possible for her to relax a bit and behave a little more like a normal baby. We just need to persevere.

Other good news is that she was visited on Wednesday by a woman from the Sensory Support Unit. It became apparent quite quickly that her expectations were that Maggie would be in a bit of a state, sight-wise. She was pleasantly surprised then that she seems to be able to see reasonably well and is fixing and following. She's not brilliant, and she still has a fair way to go, but it's progress. Good progress.

Overall I'd say she's more responsive and alert than she used to be. We're getting more social smiles and it's obvious that she's aware of, and engages with, her environment. Of course, this all seems fabulous until we glance at Alice and see how far ahead she is. But still, it is progress - and it shows us that progress is possible.

The not so good parts of the week have been our continued battle with her sleep. It's all getting a bit much. We sit there for two hours every evening, feeding her and coaxing her to sleep. Throughout the whole of this time she screams and cries. She does the same thing when she wakes in the middle of the night. Written down, it doesn't sound so bad. But it really is extremely frustrating and tiring. On top of that, she doesn't sleep much in the day. Not only is that not good for her and her development, it also means that we get absolutely no break. And when I say we, I really mean Shannon - because at least I've got work as an escape.

Our lives are all Maggie, Maggie, Maggie. Which would be fine if she was just a little easier and, more importantly, if we didn't have Alice. Poor Alice, who is just so perfect and well-behaved and lovely and who gets so much less attention than she deserves.

* PS If you're interested, I was profiled on the highly-respected Normblog site last week where I talked about, among other things, this blog. More here.

Click the picture below for a gallery of recent pics:

A Break

They had a last-minute cancellation at Quidenham on Friday. So we took Maggie there that evening. We're picking her up tomorrow (Monday) morning.

We haven't done anything too wonderful in her absence. Shannon had her hair cut on Saturday. Alice and I met her later in town and we all pottered about. We watched a bit of crap telly last night, got a little drunk and awoke at a more leisurely time this morning.

This afternoon, however, we took Alice swimming for the first time. And, as predicted, she loved it.

It's possible that we don't mention enough how wonderful - and wonderfully easy - Alice is. It's not just that she's in bed by 7.30pm and awake at around 8.30 the following morning. It's that when she's awake she's the most easygoing baby. She's very bright, very happy and an absolute joy to be with.

If we just had Alice we'd be the envy of parents everywhere. Our lives would be incredibly easy.

But the strange thing - and actually, maybe it's not that strange - is that we really miss Maggie. Even though she's a massive pain in the arse, and even though almost everything about her is difficult, we really wouldn't want to be without her.

Future Growth

Maggie's physiotherapist reckons she's doing brilliantly. And not just brilliantly for someone of her condition. This news cheered us up no end.

Her dietician, however, informed us that she's not put on weight. That she may even have lost a bit. This news didn't cheer us at all.

But that's the thing with Maggie: one minute it's this, the next it's that.

Overall, she's making good progress. She's making more eye contact, she's fixing and following, she's giving us the odd social smile, she's reacting to different stimuli and she's obviously very keen on us. I'd say she was like a three-month old baby. Or a two-month old. Not great, but it at least demonstrates that progress is possible.

And talking of progress, I've been thinking a lot about her future recently, about her life as an adult. As I was driving home today there was some fella who runs a day centre for disabled people talking about the kind of things he has to deal with. And when he spoke about the adults who go there, and what they get up to, it struck me that they exist in this kind of twilight world of disability. I mean, how often do you come across disabled people on an average day? Hardly ever, I'd wager. Yet they're out there somewhere, scurrying about in the skirting boards.

At Quidenham the other week they asked Shannon if we'd like to come with them on a big trip to Colchester Zoo. A special tour, after hours, when everyone else has left. Er, no thanks. We'll take Maggie to the zoo in the same way as everyone else goes to the zoo.

At the moment she's got us to love her. To be her friends. Who will she have when she's older? Well-meaning carers? Other disabled people? Social services?

I don't want her in that world. It's a rotten, sad and rather pathetic world. I want her in our world.

Pictures from this past week - taken on my iPhone, so the quality's not great:

Disappointed

We'd been looking forward to it for ages: Maggie at Quidenham for a couple of nights. Shannon and I were going to go out for the first time together since the girls were born while Tom babysat Alice. The following day we were going to go swimming and nip into town. Just a tiny period of normality, a nice - and much-needed - break.

They rang this afternoon, a couple of hours before we were about to go, and cancelled.

Shannon very upset. Me too.

Bollocks.

Five Go Mad in Norwich

The girls were six months old a few days ago, on April 9th. Six months. I can't decide whether it seems longer than that or shorter than that.

This past week they were joined by their older sister and brother, Louie and Isaac. It was, as ever, a joy having them here: they make me happy by just being around. You really can't beat having a house full of kids.

Alice took to them both immediately, and to Isaac in particular. He has a real knack for making her laugh. And as she's now starting to laugh properly, it's pretty wonderful seeing her so full of joy.

The weather while they were here was great. Except on the Wednesday when it suddenly became very cold, grey and miserable: the day we decided to go to Cromer. It was quite a significant trip for us because it was the first time we'd taken Maggie on such a long journey that didn't have some connection to her care. Of course, she howled and screamed all the way. And all the way back.

To be honest, her aversion to the pushchair and the car seat is beginning to drive us a bit mad, especially now that the weather's better. We're practically housebound. Well, we're not, of course, but it feels like it sometimes. It's such a shame that we can't just go out as a family and have a nice time.

We're also still persevering with getting her bedtime/sleeping routine sorted. It's been very difficult and very trying and tiring. We're exhausted. But if we crack this - if we can get her to better get herself to sleep - our lives will be so much easier.

By the way, if you live thousands of miles away you should have taken it as a given that I understand you can't just nip over to see us. I'm referring, of course, to my 'plea' in the last post for people to come and visit: "Make a bit of fucking effort" etc. My attempt there was to boldly state that if you're thinking of coming to see us, please do - especially if you live here in Norwich. Just come and see us. Don't worry about whether you might be intruding or whether we're up to our eyeballs in shit. Just come and visit. We'd love to see you.

****

Aside: Last week I went to see the comedian Richard Herring with my friend Andy. He was fantastic - Richard Herring, that is. You may recall that he's the fella who raises loads of money for Scope, the charity for people with cerebral palsy. He's a very good man. Anyway, he also does a podcast where, for donations, he'll mention your name. So as a result of Andy forcing a tenner on him at the gig, he mentioned our names in last week's podcast. And now - now that I've been called a cunt by Richard Herring - I think I can die happy. You can hear him doing it here: at around 4:30.

Pictures below from this past week. The last four taken on my iPhone*, hence the crappier quality. Click to see the gallery.

* I mention the iPhone by name because, a) I'm a bit of a wanker, and b) because it's new and I love it very, very much. It is now an integral part of me. We are as one.

Spring Bulletin

At last, a new post. Unfortunately, it's written by me again. So all you Shannon fans out there will have to wait a little longer.

Because it's been a while, there are many, many things I could write about. Every day there seems to be some new event or incident or turning point or thing I can moan about. Luckily, I've got a terrible memory - so this shouldn't take too long.

First of all, I should mention our consultation with Maggie's consultant, Dr Roy: it was nicely positive. Luckily, Maggie was in a very good mood throughout her examination so it was quite easy for him to get a measure of how she is physically. The downside to that is that he didn't really get a measure of how she is behaviourally. I'm sure he must have been thinking what a good little baby she is.

On the whole, I'd say that things are positive. This doesn't mean that she's making fantastic progress or defying expectations. It means that she's not deteriorated and that she seems to have the potential to be a little better than we first thought she would be. Possibly.

Her legs are good. Her arms are less good, but not absolutely terrible. She's putting on weight at a fairly decent, though modest, rate. Her small head is continuing to grow.

Aside: did you know that your head size is determined by how big your brain grows? It's obvious really, isn't it? It's why it's so important to us - and to her - that her head gets bigger.

He had a look at her eyes and noticed her obvious squints. She fixes and follows but it's not consistent and it's not particularly strong. So we took her to see the opthamologist who said:

It's good that she has squints in both eyes. This means that they're both 'working', so to speak. She fixes and follows but it's not consi... You get the idea. So yes, she can see. But we don't know what she can see, how well she can see or whether she can even make sense of what she's seeing. It's a right old game all this, I tell you.

At the moment - over these past three nights - we're trying to get Maggie into a sleeping routine. We're doing what works with other babies and what worked with Alice: we put her down and if she cries we leave her. For a few minutes. Then go in and comfort her. And then leave her. And then go in and comfort her. Etc. It normally works a treat.

We don't know if this will work with her. Babies with Maggie's condition have different needs. What we've got to determine is whether getting her to sleep is something that can be tackled through the part of Maggie that is basically a normal baby. We won't know until it succeeds or fails.

At the moment, it's failing. She's mostly awake - and screaming and crying and twisting and turning and getting tangled up and pressing her head against the cot bumper - between her feed at 8pm and her feed at 12am. During the latter feed she gets a dose of melatonin which enables her to get to sleep until any time between 6am and 8am. So yes, that's something.

I think she needs to learn how to get herself to sleep so that she's a bit happier. Her default position is one of distress. She's almost always crying.

I mentioned Quidenham before didn't I? It's a 'hospice' for kids like Maggie. They're great there and they do a fabulous job. What we particularly like is how much they like Maggie.

They had a cancellation the other weekend and rang to ask if we'd like to have Maggie stay there. Of course we did. With reservations. On the Thursday night Shannon and Alice stayed there too, in the family room (so Shannon could settle Maggie in and I could get on with some work). On the Friday and Saturday nights (and day times) we left her on her own.

It was good for her and it was good for us to have a break. We were able to do normal stuff like eat dinner, watch a film and make a trip into the city. Alice went to bed at 7.30pm - me and Shannon were free until the following morning. Hurrah! The sad bit - the really sad bit - was that we got a taste for how nice it could all have been had this terrible thing not happened.

What was sadder though was that when we went to pick Maggie up on the Sunday morning it was immediately apparent how different she is to Alice. And how she isn't like a normal baby. When she's here with us, all the time, it's easy to get used to her and how she is.

We've had visitors these past few weeks too. First of all, Shannon's brother Jim, sister-in-law Kirsten, niece Gretchen and nephew Sammy came to see us. It was lovely to have them here. Alice was a little shell shocked at seeing new faces (i.e. she screamed) but she seemed to like them all - particularly Gretchen, who was smashing with her. (Absolutely lovely kids, by the way, Gretchen and Sammy. If you know them, you'll already know that.)

They were followed very closely by my mother and her husband Brian. And it was lovely to have them here too. The girls received specially monogrammed teddy bears each, which they seem to like very much indeed.

I think we should have more visitors. It makes life seem a little more normal. So if you're reading this and thinking to yourself: "Hey, maybe I should make a bit of fucking effort and go and see Paul and Shannon and the girls," then why not make a bit of fucking effort and come and see us? Really, it's not hard and it wouldn't kill you - especially if you like us (which I suppose you must, if you're reading this).

Oh, and it was exactly a year ago today - on April Fool's Day - that we discovered we were having twins.

Recent photos. Click the pic to see the gallery:

Interim

It's been a while.

We've been very busy. And we've been entertaining a few lovely visitors recently. If entertaining is the right word. Which I'm sure it isn't.

Anyway, we've got new pictures and loads of stuff to rattle on about. But not now. We've got the lovely Gina from Quidenham here looking after Maggie all afternoon. So me, Shannon and Alice are going to make a rare trip into the city to enjoy the sunshine. And to do mundane things like go to the bank and pick up sundries.

Love to all.

Happy Mother's Day Shannon!

Happy first Mother's Day to Shannon!

This is a brief post as it's late and I'm knackered. But I wanted to get these pictures up. We'll write something tomorrow. Something about the following:

Quidenham.
See earlier post. This is on Shannon's to-do list.

Helen.
You may have seen Helen's many comments during the course of this blog. We'd met her before - a couple of years ago at our friends Rob and Sally's 40th birthday do - but last week was the first time we'd really met her. The great thing about it was that, because we've been communicating so much - and because she's been so fantastic, so supportive and so helpful - we felt as though she was already an old friend. It was just great having her here. Not only is she a superb source of wisdom and information, she's also extremely nice - and a very good laugh.

She's been a massive help to us. And we really appreciate it. So please, doff your cap in her general direction!

And a big mention to Rob too, who brought Helen with him, all the way from Nottingham. It's always a pleasure to see him. I was genuinely sad to see them go. But don't tell Rob that - I'll never hear the last of it.

Mother's Day.
Today was Shannon's first Mother's Day and, of course, it was rather bittersweet. I'll let Shannon write about it, as it's her day. But I'll just say that hopefully next year we'll be in a position where we can go out and do something. That is, go out to the pub.

Pictures below are from the above. The last four are from today, Mother's Day.

But aah, look at that picture below - two lovely girls watched over by two wonderful gentlemen.

A big hurrah for Shannon!

Click the pic to see the gallery:

Woods etc.*

It's been a funny week. Hectic and tough. Shannon and the girls at Quidenham for a couple of days. Us being visited by all manner of community health types. Me working.

In brief:

Shannon and the girls had a lovely time at Quidenham. It was much better than expected. I'll get Shannon to write more about this soon.

Maggie was weighed on Friday and is now just over 12 pounds. So she's put on weight at a fairly nice rate. Alice weighs 18 pounds.

We've stopped her 4am-ish feed. Friday night and last night she slept from around 1am to 8.30am. Which is great. But not as great as her sister - 7.30pm to 8.30am. What an angel.

She's about to go into her own room and in her own cot. Maggie, that is. So fingers crossed.

Yesterday and today she was a little calmer. A little. But we're not counting our chickens. She's still doing the screaming thing and being a right pain in the neck. So we're not in Norman Rockwell territory yet.

We went for a walk today that, while traumatic, wasn't as traumatic as previous walks. Maggie screamed and got herself into a state. But not as much as she has done before. And she even slept for a bit. So I think we'll persevere with this pushchair tough love thing.

She adores music. It's an instant calmative and yet she also seems to pay attention to it. Her favourite at the moment is Baby Love.

More soon.

* Title courtesy of Alice Oswald who, as well as having a great first name, is probably the best poet currently writing in English. Most of her poems are 'about' nature and all that nonsense but it's really in the way she writes: the rhythm, the musicality, her use of words. Like Ted Hughes but better. Do yourself a favour and buy here: Woods etc.

Click the pics to see them big.

Quidenham

Tom and I took Shannon and the girls for their overnight stay at Quidenham this afternoon. Or maybe two nights, depending on how it goes. Quidenham is a children’s hospice that provides care, support and relief for parents with disabled kids. More information here:

Quidenham.

The great thing about it is that they take care of Maggie the whole time Shannon’s there. If that’s what she wants. Of course, it’s not a complete break because Alice also needs looking after.

Me, I’m staying here in order to get on top of my work and all the admin and related bullshit that is now a major feature of our lives. I may even tidy the house up a bit.

Maggie officially came home last Wednesday, with next to no fanfare. Mainly because she’d already been home so often. It has been, for the most part, really hard. This is due largely to the fact that she’s constantly crying or grizzling. Wind? Reflux? Cerebral irritations? It could be all of those things. Or it could be that she just needs to calm down a bit and settle into her new(ish) environment.

The very nice woman at Scope told us that with Maggie it’ll probably be a case of doing things, and expecting things, in very tiny steps. So when we finally get her into her own bed and her own room we should definitely try to get her into a good routine. But do it at a much slower pace.

Her miserableness has an impact that goes beyond merely upsetting (and annoying) us. While she’s like this it’s very difficult to get her to engage with things like physio and speech therapy, and even normal play. Which, of course, isn’t great for her development.

It’s interesting though, the fact that she’s now starting to annoy us a bit. I think it’s healthy. Initially, we felt guilty about this but we’re starting to get over it. Well, I am anyway. I think it’s perfectly fine to admit that she can be a real pain in the arse. As I expect she will be for years to come.

But the other side to that is that I find I’m getting more and more upset for her. I mean, feeling so desperately sad and sorry for her. In the early days I cried a lot. And then I stopped crying and got angry. And bitter. I’m still those things but I’m now back to the crying as well. Which, I suppose, is understandable - it is all very overwhelming. Not just with Maggie but with Alice too; and also with Louie and Isaac (who I don’t pay nearly enough attention to). On top of that there’s my work. I’m trying to build something here, something that will go beyond a few nice jobs and bringing in a bit of money. But I can’t seem to find the time or manage my priorities properly. So I end up panicking and worrying and sometimes doing the wrong things. At the same time, I try to present myself to clients (and prospective clients) as a proper, focused, grown up businessman who has no problems at home. And on top of all that there’s the constant worry about money and the realisation that, while money can make anything in life more bearable, in Maggie’s case it could be critical.

She keeps popping into my head, does Maggie. She keeps making me cry.

See, I think this is one of the things that’s sometimes forgotten: that it’s so sad for Maggie that she’s the way she is. I don’t want her to be like that. I want her to be a normal little girl who will grow up into a normal, healthy, young woman. I want her to have boyfriends and go out dancing and drinking and generally behave like a normal girl. Basically, I want her to have a much better chance than she currently has of being happy.

What’s contributing to my sadness is that we’re slowly entering the world of disability. I find it very strange and difficult and can’t understand why these people aren’t just destroyed by how horrible it is. Not just the disabled people themselves but the carers, the admin people and the charity workers.

When we went to Quidenham this afternoon there was this kid wandering around. He was about fourteen or fifteen and he was obviously very mentally ill in some way. He was stomping around, shouting and making strange noises and laughing occasionally at nothing in particular. He was there, in the room, surrounded by people - but he was really inside his own head. The nurses were, as they should be, quite matter of fact about him, letting him get on with it. They obviously treat him extremely well and do everything they can for him. I can imagine that if I were to ask more about him the story would be how happy he is - and all that shit.

But seeing him killed me. I could barely keep from crying. Because all I saw in him was Maggie. It was a sharp kick of reality that reminded me that she will definitely be severely disabled. That she will definitely turn out to be one of those kids.

As much as I try, I can’t see anything to be happy about with that. I can’t see anything ‘normal’ about it.

And I left Shannon there, as a first-time mum, in an environment that, while lovely and accommodating, just shouts out that there’s something not right. That she’s there because it all went wrong. That she’s there because her beautiful little girl is not as she should be. I forget sometimes that Shannon is a first-time mum and how awful this all must be for her. I forget simply because there’s so much other shit to deal with.

I’m now the father of five kids. Here’s what I love about my kids: they are all lovely, well-behaved, good-hearted, bright and have never given me any trouble. They didn’t have tantrums, they didn’t get expelled from school, they weren’t fussy eaters, they didn’t have any special needs. They were – and still are – great kids. They made it easy, being a parent. They made it so that when I heard other parents moaning on about their kids not doing this or doing that, I felt pleased and a little smug. I could never understand when I heard parents banging on about how hard it is being a parent.

What I expected, twins notwithstanding, is that being a parent would continue to be easy. That it would be something I would be totally relaxed about. I always knew that Shannon would be a fabulous mother. So I was pretty confident that it was going to be a breeze. That we would be really happy doing it.

And it’s the exact opposite. That’s a real shame. Because I could have guaranteed that Maggie and Alice would, just like their older brothers and sister, turn out to be lovely, happy kids that are a credit to their parents as well.

Video below, from the other day:

Message to Maggie

The constant crying: it's driving us mad.

Maggie's homecoming

Maggie's coming home tomorrow (Wednesday), for good - one day ahead of schedule only really it's well over 100 days behind. And, to be honest, because she's been home more often than in the hospital for the past three weeks it all feels a bit anti-climactic. Not at all like the nerve-wracking, overwhelming day when we brought Alice home - because she'd never been home before and Maggie has, loads. So now, as if there wasn't enough to make me feel sad about Maggie, I feel sad for her about this too. That her official 'home' day is pretty much just like any other of the past month.

Maybe I won't tell her - I could always get Paul to photoshop in some banners and balloons and rewrite this little chapter of her little history.

I feel a bit sad for us too, that after four and a half months this isn't a bigger deal, a more dramatic moment. At the discharge meeting on Monday our consultant kept saying what a big step this was - which pretty much shows how out of the picture he is because he wasn't aware at all of the amount of time we were spending with Maggie at home. We've been doing the big step for weeks.

Then again, four and a half months ago this day was never going to happen, and it has. That is a big deal - and a big triumph for our little Maggie. Well done, lovely girl - and welcome home!

At Home With Maggie

She's hardly ever happy, Maggie. Or, rather, she is only when she's being played with - when she's being made to be happy. Apart from that, she never stops howling.

We're hoping that it's something she grows out of. That she's just hypersensitive to things like wind or being unable to get to sleep. That is, we're hoping that she's just a bit of a moaner. A lot of a moaner.

We should call her Malice. Malice and Alice.

On the plus side, we can see that since being home she's that little bit more alert and lively. And we've had a few moments of triumph: such as her tolerating - though not necessarily liking - water on her lips. She's also been taking in and swallowing spoonfuls of Infacol, which is quite treacly and tasty. Also, she can obviously see, although perhaps not too well. She fixes and follows, but it's erratic and tends to be only with certain objects.

She also looks much better. She doesn't look so much like an obviously sickly baby.

On the down side, we can tell that her limbs are stiffening. So we need to step up the physiotherapy. Which may, of course, achieve nothing. But you never know. She hates being in the pushchair and the car seat which, as you can imagine, is a real pisser. When other babies get themselves into a state, a quick trip out can be just the thing to soothe them. She does, however, like the sling - because she likes the closeness. A solution to the pushchair problem may be to swaddle her so she feels enveloped.

I think it's time that we, tentatively, start to treat her a little more like a normal baby. Her cot will be here next week so she can start going to bed properly. And maybe start being ignored a little more. For her sake and for our sanity. And, you know, to help get her in to a routine. It worked a treat with Alice - bed around 8pm, up at 8am.

By the way: Hurrah for Alice. Who is, I would contend, the best baby in the world: bright, loving, happy, quiet and very, very sweet. She reminds me very much of Louie, who was also the best baby in the world.

So it's very hard at the moment. We take it in turns to stay downstairs with Maggie so that one of us can get some sleep. No point us both being awake all night. It's been moderately successful. She has melatonin to help her get off to sleep because it's often the case that she's most upset between around 10pm and 1am. From there she gets from around three to four hours sleep. Which would be tolerable if we didn't have to wake to feed her a couple of hours later - and then stay awake for an hour while she's fed. All the while hoping that she doesn't wake or isn't sick.

She needs to put weight on so they're going to consider upping her feed. Hopefully during the day. So that we can get to a stage where she doesn't have to be fed so often during the night. That'd be nice.

I wrote the above a few hours ago. It turned out that she was a little better this evening, a little more settled and responsive to us trying to soothe her. So much so that we managed to watch two and a half episodes of Curb Your Enthusiasm while she was awake.

But then there was two hours of trying to get her to sleep. She's still awake now. I don't know how she does it.

I'm quite busy with work at the moment so the bulk of the care is down to Shannon. She is, I have to say, doing a fantastic job. I don't tell her that often enough. Partly because it seems faintly patronising and trite when I do say it. It's extremely hard for her and I sometimes forget that this is her first time as a mum. And it wasn't supposed to be like this. Really, if you were watching her in a film you'd be crying your eyes out.

But she is doing a wonderful job with both of the girls. They're in the very best hands. As am I.

Nights and Nightmares

Yesterday (Saturday) was a good indication, I think, of what it's going to be like having Maggie home: very, very difficult.

All day long, and all through the night, she was, when awake, in distress. Constantly crying and howling and often looking as though she was battling with herself. Or, rather, with her limbs. It's really heartbreaking to watch, not knowing why she's looking so sad and terrified as she stiffens her body, windmills her arms and clutches at the air.

What we need to determine is whether her distress is due to reflux, wind, tiredness, cerebral irritations or something else related to her condition. Or whether this is just what her condition is. I know I keep saying it but... I'm annoyed about the fact that we seem to be in the hands of people who, despite their medical qualifications, do little more than make guesses. Guesses, I might add, that are somewhat less informed than our own.

If it's reflux, fix it. If it's wind, fix it. If it's her eyes, let's get them properly examined. If it's something going in her brain, let's monitor it and attempt to work out whether there are things we can do to calm her. I've noticed, for instance, that she really hates being lifted up and down in a playful manner (something that all my other kids, including Alice, loved). Why? Is it because her head's spinning? Does she have a headache? Is she hypersensitive to certain movements? Is it something to do with her eyes?

One of the main problems with everyone we deal with is that they're reactive rather than (dread word) proactive. As time goes on, and as we have more dealings with them, we're realising that we're going to have to keep making a fuss - loudly - to get things done. There's no point waiting for them to do anything on Maggie's behalf.

Oh, and I realise that I'm often complaining about these people. But so what? Maggie's going to need a lot of care so it's vital that we nail now how it should be and on what terms. I don't care if we upset people or if they don't like us. That's not the point. The point is acting upon the realisation that, in the world of child disability, it's he who shouts the loudest who gets things done. I don't want to be in a position years from now feeling guilty about the fact that we didn't do more or that we sat back and just hoped for the best.

And let's not forget that we're very angry. Angry that they don't do enough now. And angry that those fuckers are probably responsible for Maggie's condition in the first place. Something that we haven't really gone in to detail about on this blog because a) it's extremely painful to think about and b) it's something we need to get on top of properly before we seriously push our legal case.

So if you think I'm hard on nurses and midwives now, ask me about what happened on the day the girls were born. Irresponsible, incompetent, lazy, complacent, useless cunts.

Anyway.

There are many problems with Maggie being constantly distressed: it's really unpleasant for her, it's really unpleasant for us, she's never in the mood for essential physio or speech and language therapy, she's constantly tired, we're constantly tired, and her sister - who is an absolute angel - gets starved of attention. Poor Alice.

The twins thing, as we always knew, was going to be difficult. But with Maggie like this, it could be nigh on impossible. Yesterday was a portent of that.

Home Sweet Home

It's happened before, but obviously not enough. For why else would it seem so significant that when I gazed at a sleeping Maggie at 4am this morning I thought, "Aw, lovely, lovely baby" instead of "Poor little girl"?

She's home nights. It's hard work. But it's fantastic she's here. And although it's still early days, it seems to have done her - and us - the world of good.

But by God, it's tiring. I tell you, I'm too old for this.

Maggie's Nighttime Adventures

It was Maggie's first night at home on Friday night. I'd love to be able to say that it went well. But it didn't go well.

We knew there'd be problems when we picked her up from the hospital at 2pm and were told that she'd been asleep since around 8am. It's another one of those things that we thought was well understood: that she needs, as far as possible, to be kept awake during the day. So that she can get back to a proper nighttime sleeping routine.

The problem with her being home was that she didn't sleep. More than that: she was very distressed, constantly crying. She was up from around 2am and finally got to sleep at 8am. Shannon did the first half, with me on from 5.30am. And in between that, there was Alice's feeds.

Maggie was permanently upset. Crying all the time. In obvious pain, for whatever reason.

We took the girls out for a proper walk yesterday afternoon, for the first time ever. To have a stroll through the lovely cemetery that backs on to us and to visit their brother at work at his garage. Both of them together in their nice double pushchair. Maggie screamed and cried the whole time. It wasn't very nice.

The thing is, we always we knew it'd be hard with twins. The suspicion, however - based on the fact that Alice is such a good baby - is that, really, it would have been okay. Maybe. As it is, it's a bit of a fucking nightmare.

Before they were born we'd planned to have the girls sleeping together in a nice cot bed. I don't think this is going to work now. We tried them together, with Alice at the bottom and Maggie in her own little sleeping bag thing. But she got so upset that there was the danger that she would also wake her sister up.

I think the following should happen: Alice goes into her own room while Maggie stays with us in our room. Okay, it's not the way we wanted it to be but we have to get practical about this. And get organised.

Because Maggie doesn't feed orally, it's so much harder. She's fed on a strict four hour rota. Each one involves pissing about with tubes, syringes, Gaviscon and the pump (that bleeps very loudly - just the thing to wake Alice up). We can't sleep while she feeds because she often vomits. Each feed takes an hour. So once it's finished, it's not too long before we're having to get the next feed organised. In the middle of the night, in the dark, it's even more difficult. In between all that, of course, we also have to feed, and be mindful of, Alice.

Yes, you'd be right in thinking that it sounds like a right pain in the arse.

Yesterday Shannon spent the night at the hospital with Maggie. The same thing happened - she was up all night, distressed. A consultant who Shannon had never seen before suggested that what was going on was 'cerebral irritations' - rather than reflux. But he, of course, is just another voice in a very long list of voices.

Me, I'm getting sick and tired of all the vagaries. I think it's about time we stopped pissing about at the hospital - relying on the hospital - and took charge of a few things ourselves. It's now the case (though, in truth, it's been the case for a while), that Maggie being at the hospital is detrimental to her progress and well-being. She needs to be home, whether it'll be a nightmare or not.

Too many times we have conversations with consultants, doctors and nurses that go like this:

Us: Do you think Maggie's distress is caused by reflux?
Them: Hmm, yes, that could be the reason.
Us: Or do you think it's cerebral irritations?
Them: Hmm, yes, that could be the reason.

We'd be just as well asking the fucking cleaner.

Now, it may be the case that it's impossible to tell what's going on when Maggie gets upset. But if it's impossible for doctors and consultants to tell, it may as well be impossible for us to tell. That is, we should now be taking charge of Maggie's care and making our own 'diagnoses'. The big advantage of that, of course, is that we actually spend time with Maggie rather than observing her for a few minutes here and there a couple of times a week. We're far better informed about her condition than they are.

To be honest, the seeming lack of expertise at the hospital really pisses me off. It just seems that they're all in the general field of "ill baby" care. There doesn't appear to be anyone who specialises in the kinds of problems that Maggie has. I know her condition is rare but I don't think it's so rare that no-one specialises in it. I think we need to be getting out there and talking to other people. Other parents, for instance. Or the people at Scope. Or social workers. (Thanks, Helen, for your advice on this.)

You know, it'd be really nice, just once, to hear someone say something along these lines:

"This is what's wrong with Maggie. This is how we're going to try to fix it."

The plan today was that we'd take her back to the hospital tonight and one of us spend the night with her. But we decided, instead, to keep her home. I'm going to stay with her all night in the living room - me on a mattress, Maggie in her carrycot - while Shannon and Alice stay in our room. And we'll swap tomorrow night. We'll keep doing this until we get more on top of getting a decent sleeping pattern for her. It may not happen, of course. But we have to try.

As far as I'm concerned she may as well come home now. There's no advantage to her being at the hospital. Yes, it's going to be really fucking hard. But at least it'll be really fucking hard in the comfort of our own home. And without a load of ineffectual - though sometimes well-meaning - twats getting in the way.

Welcome home Maggie!

Mary's Visit, Photos and Maggie Home (For A Bit)

Given that Shannon is her sister, it’s probably more appropriate that she write about the time she spent with Mary this week. For my part, I just want to say how nice it was to have her here and what a help she was. It was great having her around, she was great with the girls and she really lifted Shannon’s spirits. Well worth the three week trip to get here I’d say.

It’s just a shame that while she was here I was both ill and a little bit stressed with my stupid work stuff. So I wasn’t on top form. In fact, it’s entirely possible that I was occasionally a bit of a knob. Ah well. I’ve got a disabled daughter – I can behave how I like.

The big news last week, of course, was that Maggie had her gastrostomy operation on Wednesday morning. We were there at 8am, cheering her on as she was wheeled down to the theatre. Although we were told that it would take an hour, or an hour and a half, it took nearly two and a half hours. Not too long to cause us to panic completely, but enough for us to become a little worried.

As it turned out, the operation was a success – although success seems like the wrong word. Particularly because the tube, peg and valve she has poking out of her stomach seem positively Frankensteinian. In fact, it was very upsetting when we saw it for the first time. We had to constantly remind ourselves that this act of butchery was for the greater good. Let’s hope so.

Since she’s had the operation she’s been more distressed. Up until Wednesday she was just about getting on top of going through the night without too much trouble. Now she’s all over the place. Possible causes of her distress are the valve thing itself irritating her, the after-effects of the anaesthesia, more reflux (a possible side effect of a gastrostomy) and general pain. She’s also having problems keeping her food down and vomits with almost every feed - so it’s likely that they’ll look at quantities and timings tomorrow. On top of all that, of course, is her overall condition.

Oh, and the fact that her bum, for some reason, is now red raw. In my experience there’s usually one reason for that: the nappy isn’t changed often enough.

Actually, one of the small bonuses of Mary being here is that she saw first hand how casually-minded some of the nurses can be about Maggie’s care. (Not to cast aspersions on nurses or anything. In fact, I wouldn’t fucking dream of it.)

Maggie had her third home visit today. This would have been better, I’m sure, had she not been afflicted by any/all of the above. But she was and so she was occasionally quite distressed. However, she was also occasionally in good spirits. During those times it was great to get a better feel for her and for us to be more relaxed about the way we handle her.

For me, being at home makes a massive difference. I don’t like the hospital – duh – but I especially don’t like the restrictions it places on my interactions with Maggie. Maybe it’s just me, but it always brings out a degree of self-consciousness.

So today Maggie responded very well, as usual, to vigorous horseplay. She liked having her feet bitten, as well as the palms of her hands. This alongside the rough and tumble of having her arms and legs pulled this way and that way. Personally I think it might be a good idea to incorporate mouth stuff in this general play so that it becomes, for her, another area of fun.

We also dabbed water on to her lips in order to encourage her sucking and to get her lipsmackinthirstquenchinacetastinmotivating.... It was moderately successful. I think we could be a little more daring in this area, perhaps introducing a number of different tastes and textures. The worry is that she’ll choke, although it does seem unlikely.

But hey, what do I know?

All in all, I’d say she had a generally good day today. When she was in good spirits, that is. And when she wasn’t vomiting.

Below are some pictures of the past week. There’s Mary, Shannon’s sister; our friends Tara and Louise who visited us at the hospital yesterday; and Alice’s most favourite person in the world: Samuel Beckett. She stares and stares at that picture of him and often chuckles away at whatever conversation it is that they’re having. Good old Sam, always good for a laugh.

Talking of dead great writers – or, rather, great dead writers – it was sad to hear of JD Salinger’s passing this week. His short story, For Esmé, With Love and Squalor, is one of the best things I’ve ever read. If you haven’t read it, I’d highly recommend that you do.

Click the pic to see the pics:

Maggie Home (Briefly)

I was going to write a very long post about Maggie coming home yesterday. I was also going to write about the visits we've had from Mary (Shannon's sister) and Daniel (Swedish Daniel, as we call him, because he's from Sweden). But I'm not very well today. A combination of shitting and puking topped off with what may well turn out to be the flu.

But I'll go and see my doctor tomorrow. Because if you're at death's door, he's just the man to help pull you through.

Courtesy of Eric Morecambe, that one.

So we've had a busy weekend. Daniel arrived on Friday, left on Sunday afternoon and spent most of his time in the same spot on the settee. We did feel a bit bad about that - that we weren't more entertaining - but the sheer pleasure of our company more than made up for it, I'm sure. Mary arrived on Saturday afternoon, all the way from Texas, and she's been great - particularly today when my self-pitying whining prevented me from being too involved with the day's activities.

So yes, it's been great having them here. As well as being a help, it's just good to have nice people around the house. At the same time, it's a bit of a sad reminder that we're not a little closer to our families. It's funny, but it's an assumption that almost everyone to do with Maggie's care has made: "Oh, but you'll have family to help you out won't you?" Er, no - because we didn't plan on having a disabled child you see. We thought it'd be okay, just me and Shannon.

Best laid plans and all that.

Maggie's first visit home was, we believe, something of a success. She was a little tired and a little grumpy but, when awake (and not upset), seemed very alert and very happy to be here. We fed her here, with the pump, and that went well too. The whole visit was as good as we could have expected. The most important thing about it, of course, is that it made us feel a little more confident about getting her home permanently.

It was wonderful having her home. And it was particularly good to see her reacting to her new surroundings. As I've mentioned before, she responds really well to music and it was good to be able to whack it up a bit and have a proper dance.

There are, below, pictures and a short film from the day. Again, the quality of the film has been downgraded from the original. But it still gets across quite well how Maggie was yesterday.

And no, that isn't a trick of perspective - she really does have giant-sized hands.

I have to say though that this film (and the last film) paints a pretty positive picture of Maggie. She looks happy, alert and responsive. But that's not how she is all the time. Far from it. But the thing is, I'm not going to be filming her when she's distressed and I certainly wouldn't upload that type of thing here.

I mention this because although I'd like everyone to see how great she can be, I don't want to paint a completely false picture.

Talking of pictures, you'll see that we still have our Christmas tree up. I'd like to be able to say that that's because we've been so busy with all that's gone on that we just haven't had the time to take it down. But the truth is, we do this every year. It's nice to have it in the room, the glow of the lights providing a little cheer through the darker months. Last year - or the year before - we didn't take it down until the end of March.

Season's Greetings to you all!

Visits

I'm really, really looking forward to my sister, Mary, coming over - just a few days away now and hopefully Maggie will be home for the afternoon to welcome her. It'd be nice for her first time with the girls, her new nieces to add to our lovely niece Gretchie (and nephew Sammy!), to be outside of the confines of the hospital. Our old host brother, 'Swedish Daniel', is coming over for the weekend too - another pair of hands to put to good use in the caring of our girls.

These visits couldn't come at a better time, especially after the sobering visit from our community health nurse this morning. She's nice, very sympathetic, championing our corner and getting things under way...but the reality of the gastrostomy is slowly becoming just that. I was looking at Maggie's perfect little baby tummy last night, getting sad and upset about what's going to happen to it - what has to happen to it to take care of something as simple, natural and important as eating. Sometimes I find it hard to take it all in, to really believe that this is going to be my life, and my life as a mother. I was rather late in coming to it but I always knew I wanted to be a mother, and I was pretty sure I'd be a really good one. I hope I still will be in the end, but it's not the kind I wanted to be, not the kind I imagined - and the sheer, complete, helpless unfairness of it all has really been getting to me this week. Getting to me...the truth is it makes me want to scream, cry my eyes out and just give up.

Luckily, the feeling usually passes quite quickly - when I see Alice, when I can comfort Maggie, when I get a hug from Paul. But talking today about all of the things we'll need - boxes and boxes to be delivered every month with the disposable tubes (6 a day, every day) and accessories, food, medication - and the struggle we'll face when it comes to finding quality childcare for Maggie, and returning to the hospital to replace the button, and trying to juggle physiotherapy, speech and language therapy, the respite and care services of the local children's hospice, the home respite services through the hospital, the health visitor, specialist health visitor and community health nurses while still doing all the normal things with Alice and trying not to notice that the health care professionals keep talking about Maggie's gastrostomy in terms of years rather than months...well, I've had a right pity party day.

So, the arrival of family and friends is just what I need to pick me up, re-energise me and get me focused on my lovely little girls instead of myself!

Maggie

I've always been a bit sentimental, especially when it comes to music. And because I was in the mood for listening to something sad and sweet this afternoon, I made it worse by remembering this old Foster and Allen song from a record my mam and dad had when I was a kid.

Homeward Bound

We were told yesterday that Maggie's gastrostomy operation will take place next Wednesday morning. Which is both good and bad: good that they're getting on with it, bad that they're getting on with it.

I was only thinking this morning that it would have been difficult with twins anyway. I think we've forgotten that. Then again, Alice is a dream. Maybe Maggie would have been a dream too. Maybe it would have all been really easy and lovely and manageable. Maybe we would have been really happy.

The worst part of all this is thinking about what might have been. I think I've said that before. I still - we still - have those moments where we look at Alice and become overwhelmed by the sadness of Maggie not being there with her.

Of course, it's not just a case of getting her home and having her literally being with her sister. Whatever it's like, it just won't be the way it should have been.

I think there's a tendency for us to think about how bad and sad this is for us. Which is fine. You can't blame us for that. But I think we occasionally forget how bad this will be for Maggie. We don't know yet exactly what her disabilities will be, except that they'll be serious. Who'd want to go through life like that? I wouldn't. Poor Maggie.

And what was it about Gok Wan's programme about disabled women this evening that annoyed me? I didn't watch it. I couldn't face it. Maybe I suspected that it would be full of platitudinous crap about how even though they're disabled they're just like 'normal' women with the same ridiculous hang ups about beauty and self-image and blah, blah.

I think it's because I'm still resistant to the idea that there could be anything 'normal' or 'positive' about being disabled.

But we'll see.

We're currently still trying to re-set Maggie's body clock. I say we but I really mean Shannon. She's up at the hospital now, no doubt trying to keep her awake and keep her calm while she is awake so she sleeps through the night. Or at least through a good portion of the night.

The idea is that she'll be a bit easier to manage when she does come home. To be honest, because I'm the way that I am (not thinking about anything until it actually happens) I've been a fair bit less involved in this. It's going to be tough, we know it's going to be tough, so let's just deal with it at the time. Which is probably a daft way of approaching it. I don't know.

So she'll be coming home properly soon with her button gastrostomy and feeding pump and tubes and medicines and Gaviscon and all sorts of crap. In the meantime, they reckon we can get her home on day release type visits. Presumably to get her acclimatised to her new environment (and to how fucking cold this house is).

Below, the girls together - for the first time ever - in the double buggy today. We went as far as the hospital canteen. Which is the furthest Maggie has ever been.

Friday Film Day

I decided to have a bit of time away from work today so accompanied Shannon and Alice, first of all, to McDonalds for breakfast. The Double Sausage/Egg McMuffin thing is about the only thing of theirs I like. And then into the city where it was far colder and more miserable than we thought it would be: post-Christmas bleurgh and a general air of lethargy. It was like the footage of the high street you see on the teatime news when they’re banging on about the recession.

But we bought socks, blank CDs, a bargain priced Laurel and Hardy encyclopaedia, various baby requisite-t-t-t-s and a selection of the day’s finest newspapers and mags: The Sun, The Telegraph and The Spectator (because I’m getting more right-wing as I get older). Plus a couple of copies of the local newspaper, the EDP, because my article about Twitter and LinkedIn was in the Business section.

My second article no less. With my picture and everything.

Then up to the hospital to see little Maggie.

She was in really good spirits all day. She was awake on and off but during those times she was bright, alert and very happy. We’ve recently been taking her into the kids’ playroom and blasting music at her while dancing around. The standard stuff you’d do with any baby, for sure; but for Maggie this is new. It’s a real change from the somewhat stultifying atmosphere of the ward where they’re obsessed with dimming the lights and creating an artificial dusk any time after 2pm. So in the kids’ playroom it’s all bouncy and loud and bright. The only drawback is that the CD/radio player seems to be permanently set to Radio Norwich. This afternoon we had to put up with old shit like M People’s Search For The Hero.

If you haven’t heard Radio Norwich, it’s here. And yes, it really is the world of Alan Partridge brought to life.

But anyway, Maggie loves the music and it’s obvious that this will play a big part in her ongoing stimulation. But not M People. Something else beginning with M. Er... Max Romeo. Babies love a bit of reggae.

Tom turned up later in the afternoon, still nursing a killer hangover, but alive enough to be able to keep an eye on Alice while we went with the ophthalmologist to have Maggie’s eyes checked.

As far as he can tell, her eyes are physically fine. However, the nerve leading from her eyes to her brain is somewhat pale. This could be a problem. He’s seen it before in babies who are premature and it often turns out okay. But of course Maggie isn’t just premature – she has a whole host of other, far more serious, issues to contend with. So it’s possible she’s got problems with her eyes. Or it’s possible she may not. As usual, it’s a matter of waiting. As the ophthalmologist said, we are by far the best people to recognise if Maggie’s having problems with her vision. Sadly, we’d already noticed that she wasn’t really focusing and following, which is why we asked for the tests in the first place. But still, it could all just be a matter of time.

Or it could just be related to the fact that there's always a degree of retardation when it comes to any baby that spends a significant amount of time in the hospital.

Talking of which. There's a baby in the same ward as Maggie who was visited by quite a few people today: family and medical types. I lost count of the times the parents brought up the fact that their boy has been in the hospital for six weeks and that this six weeks has been like a lifetime for them. A lifetime? I wanted to shout, you should try three fucking months you amateurs!

Well, you know how competitive parents can be when it comes to their kids.

It was, on the whole, a good day today, as you’ll see from the film below. Before you watch it though I have to point out that Maggie can move on her own. She was just having a bit of a pullabout session at the time.

Oh, and for some reason the quality of the film is much lower when posted on this blog than it really is. So I'll try and put it somewhere else a bit later.

Shannon’s staying with Maggie at the hospital tonight. Let’s hope they have a good one.

Click the pic to see the pics. Click the film to see the film.

And yes, I know that, strictly speaking, Max Romeo would be filed under 'R' not 'M'.