Thursday, 1 April 2010

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:


  1. Hi Paul and Shannon,

    We've nearly got a new car, by the end of today we may even have it, so we'll be able to visit you, as we like you! we'll be in touch, lots of love xxx

    Maria and Matthew

  2. I already proposed a date, now waiting to hear back from Shannon. So no hesitation here!
    Beautiful pics. Really. Don't know how you do it to always catch Maggie not crying at all. And Alice, whoa, she looks like a sharp one. Those eyes, that look. Reminds me of someone ;-) Glad Maggie's condition hasn't deteriorated. Sorry to hear about all the distress. Must be heartbreaking. You'd think they grow out of it eventually. I do wonder if she has different needs with regards to the sleeping routine. It's so hard to figure out with babies. They can be so damn fickle. Anyway, look forward to meeting you all in Summer. Normal is good!
    take care xxx Wini

  3. Love the's good to see all my nieces and lil nephew together!!! I always say.....Alice looks like she is up to something...I am convinced she is plotting, just not sure what it is yet!!!! They both look so grown up and I can't believe they are closing in on 6 months. Time flew!!!!

    We're playing lotto....if we win, we'll buy a house over there and spend lots of time there.....we'd be popping over so much you'd have to actually tell us to stop. Big hugs and kisses to Maggie and Alice....miss them sooooooo much. Miss you all, actually.


  4. thanks for this update, really very much. to hear the ups and downs of daily life and to glimpse if only small details and small doses at least part of what is going on brings both hope and a sense of purpose. even the small daily goals that can be achieved are victories to be celebrated.

    keep posting the fantastic pictures!!! like mary says, once we win the lottery we will buy a house over there and me and paul can go for a nice motorbike ride in the country.

    love you all!

  5. Well I like Shannon and the girls but...
    Ha joke.
    WIll be down soon my friends to hassle you once more!!!!!
    Good to hear your news.