Thursday, 25 November 2010

MRI Results

This afternoon we had a meeting with all the professionals associated with Maggie's care. It seemed to consist mainly of (dread word) diarising and was, for that reason, a little irritating. And a little pointless.

We were also given the results of Maggie's MRI scan.

The first thing to say is that we need to have another session with Dr Bem to discuss them in detail. They were essentially read out to Shannon while I went in and out the room, trying to quieten Maggie. There was little attempt to translate the results into plain English or for them to be interpreted into something that made sense on a future prognosis level. If you see what I mean.

So there was talk of white matter and grey matter and how Maggie's white matter is very severely damaged. This is the stuff that affects movement and limbs. It is consistent with the damage that was shown at birth.

Her grey matter, while less affected, is, unfortunately, somehow dependent on the quality of her white matter and how communication between the two takes place. For example: while she can clearly see, it could well be that she has little understanding of what she's seeing.

So really there has been no improvement. No magical change. She is a severely brain damaged child and will always be that way. Which is why she is now officially diagnosed with cerebral palsy.

As always, we were unable to get simple answers to simple questions. And that's because, really, there are no simple answers. Every child is different. It's what we're told all the time. While that's frustrating it does, of course, mean that there is some hope that she will be able to defy certain expectations. Or not.

We can only hope.

So far, however, her development has been poor. In terms of things like head growth and general growth. Whereas before we were pinning our hopes on helping her brain to grow through nutrition, it's likely that her brain isn't growing because that's not what her brain is wired to do.

So what we have, in essence, is what we always knew and what we always feared. Of course we were hoping that there would be improvement with her brain. Who wouldn't hope for that?

So in all, it's a very sad day. Which has yet to properly sink in.

Tuesday, 9 November 2010

A Break


Today we took Maggie to Quidenham for a couple of days. It was, as always, really hard saying goodbye. We miss her so much when she's not here.

That said, it's been very difficult these past couple of weeks. Her sleeping has got worse. Shannon and I have barely slept. And as well as being exhausted, I've been getting terrible headaches that I've been unable to shift. On top of that, I think I might have a stomach ulcer.

Poor me.

And poor Shannon who has been feeling extremely delicate and sad and worn out. She's at her wit's end.

We so desperately need this break. For both our physical and mental health.

Maggie's problem - I think - is that she's been suffering very badly with wind. She breathes poorly and snorts and gulps all the time. So she swallows too much air. The wind doesn't just cause her pain, it causes her to vomit - which she's been doing during, and after, every feed. So despite her being on the new higher calorie feed, she's still not putting on weight. Which means she doesn't sleep properly - something that's extremely important for her development.

On and on it goes.