Monday, 3 May 2010

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:

5 comments:

  1. Lots of good news here! Hurray!
    Sorry to hear about the RSV. Hop ethe girls are feeling better after the long "sunny"?? Bank Holiday.
    Lovely pictures of the ladies! Absolutely brilliant to see those big smiles.
    Good luck with everything,
    H
    xx

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  2. i LOVE this pic right here!!!!
    the ups and downs... i read and reread this post and although i see the signs of heartache and can see you all being weary... i see the overriding sense of joy in the growing number of small victories.
    i for one, enjoy reading about not only the good times... but the tough as well. keep sharing!!

    loe you all!!!
    bob and mary in texas

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  3. Great to hear some good news. Sounds like real progress. Just wish you were getting more of a rest. Don't play down the screaming. It really is intolerable isn't it?

    Anyway, I really do sdend all my love and promise to come over in the summer.

    Love and kisses to everyone!!

    Love Sally xxxxxx

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  4. The picture of Maggie and Alice on the blanket is now the background on my work computer....I love the ones of the two of them together.

    The two of you continue to do a tremendous job....it's so admirable. And if you want Alice to have some more attention, by all means just send her over here. Surely at 7 months she can travel alone :P I'll be on the other side waiting for her.

    Keep pushing along, Maggie.....show Grammy and Grampa what a good girl you are in the pushchair!!!

    Love to all

    xoxo
    Mary

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