Tuesday, 27 September 2011

The Happy Eater

Yesterday I fed Maggie a full jar of porridge. Followed by half a jar of egg custard. It doesn’t sound much but, for her, it’s an incredible amount.

She managed this partly because I decided not to plug her in for her lunch time feed. So she was hungry – something that, due to her strict feeding regime, she’s never really been.

As I said in the previous post, this is still early days. As things stand, the food she eats through her mouth won’t provide her with the amount of calories she desperately needs. So we can’t stop the tube-feeding just yet, if ever. She also needs water and liquids, something she’s not yet capable of swallowing successfully.

The thing is, the stupid feeding machine and the constant plugging in to her stomach is the only artificial intervention she has. She doesn’t need to be attached to monitors or oxygen or anything like that. So her being liberated from it will be a very big deal indeed.

The food through her mouth also seems to be making her happier. Her reflux seems to be significantly reduced so she’s a lot more comfortable. Which means she’s sleeping better at night.

It’s one of the things that’s always bothered us: that the first two years of her life were ruined by her digestive problems: the constant vomiting, the reflux, the all-round misery of being in pain and the lack of sleep that came out of that*. It severely impeded not only her general happiness and well-being, but also her crucial developments. We’ll never get those all-important first years back.

But still, we’re over the moon that things are starting to improve.

* Two colons within a single sentence. Awesome, as they say.

Tuesday, 20 September 2011

Happy Birthday Shannon!

Big and happy birthday wishes to Shannon (pictured, above) who is, by some considerable distance, the best mum in the known universe. And beyond.

Not that I'd want to define her as just a mum, of course. She's got loads of great things going for her. Loads!

Monday, 12 September 2011

A Breakthrough!

Just a short post:

Some weeks ago I decided to take the bold step of forcing Maggie to eat through her mouth. As you'll know, she's never eaten through her mouth and has always been tube fed. The thought of her doing that for the rest of her life is one of the main things that saddens me about her condition.

Feeding Maggie through her mouth is a very perilous task, not least because she vomits so often and is so orally averse. Over the past eighteen months we've got used to the fact that she was essentially nil by mouth.

But as I say, a few weeks ago I decided to basically start shoving food in. It was, taking into account everything that's gone before, a huge success. Yes, she threw up and gagged occasionally but on the whole the food went down okay. It seemed to me that one of the main problems was that she was psychologically opposed to it all. For instance, every time I approached her mouth with a finger full of food she grimaced and then pulled all sorts of faces while trying to force the food down. But I was hoping it was just a matter of perseverance - something she'd get used to.

Anyway, she's been very ill these past couple of weeks with a chest and throat infection. So the feeding was put on hold. This afternoon, however, I decided to give it another go.

This time, I have to say, was simply amazing. Not only did the food go down nicely, but she also welcomed it - even going so far as to smile as it approached her mouth. I can't tell you how happy this has made me. I'm determined that she's going to get on top of this.

Of course, it's early days - small steps and all that bollocks. It may be the case that she's not so good next time or that she goes off it completely. After all, one of the most consistent things about Maggie is her inconsistency.

But still, this is - for her and for us - a momentous breakthrough.

Sunday, 11 September 2011

New Post

It's been a while. Too long. I was going to write a new post tonight but I'm too tired. In the meantime, here's a picture of Maggie and Alice: