Wednesday, 16 September 2009

A Mixed Bag of Fortunes

We had a mixed day on the 24th August. Bethany had been off her food for just over a week, gagging and coughing when swallowing. This was totally out of character for her, she loves her solid food. Difficulty with feeding is par for the course with Kabuki Syndrome so it wasn't a big surprise but still disappointing as Bethany had been doing so well. That afternoon brought an appointment with the speech therapist, which was well-timed considering we were really ready for the appointment. Claire listened to Bethany's thraot with a stethescope while she had some solid food and told me that Bethany wasn't swallowing very well and the food was hanging around in the back of her throat. Her suggestion was to keep Bethany nil-by-mouth for a week and feed her entirely through her gastrostomy tube. Bethany does have these episodes, she can go through phases of doing really well with her feeding and phases of doing not so well. Although being tube fed felt like a huge backwards step we're hopeful it's just a minor set-back and she will get back to normal soon. We've worked really hard on Bethany's feeding and fought with more than one professional to resist complete tube feeding. So I came away from the CDC feeling fairly disillusioned. My beautiful girl of course was her same happy, smiling self. Nothing fazes her.

Returning home I made my Mum and I a cuppa and some dinner while Bee had a nap. Recently I've been practising clapping and sitting up with Bee, she's not really getting the clapping at all but the sitting is coming along nicely. Although she hadn't actually done it yet her torso seemed to be getting sturdier and less floppy. plus the main thing is Bee wants to sit up. When on her back she strains to lift her head and shoulders from the floor and can get very frustrated with her inability to move.

Bethany slept for about an hour when we got back and when she awoke she spent some time playing with her Grandma while I did some mundane house jobs, the type that never go away, like washing and the dishes. We've been using Bee's Blossom Farm Sit-Me-Up Cosy for sitting practise, it gives her something to fall back on to, which she does. A lot. Of course we thought this particular afternoon would be no different. How wrong we were! Bethany sat. She actually sat. Unassissted. For almost a minute. I could have cried, what an achievement! I'd been starting to think that she was never going to sit but there she was, legs splayed and looking almost as surprised as we were. Then, of course, the inevitable happened: she leaned too far one way and down she went. I expected her to cry, after all it was a new experience and Bee can suffer from a lack of confidence with new things, but no. She handled sitting the same way she's handled everything else so far: with aplomb. Thriled beyond words I sat her up to try again, just to be sure it had happened and it wasn't a fluke. But there she was, sitting up again and starting to look very pleased by all the attention and clapping being bestowed upon her.

After a few attempts Bee started to get confident and decided she wanted to have a good rock back and forth, which is something she loves to do. And that is her downfall. She's just not sturdy enough to do that, but of course there's no explaining that to her. Since that afternoon we've kept working on the sitting and it's coming along nicely. We're trying to encourage her to learn how to catch herself now, which will be the next stage.

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