Monday, 20 June 2011

the bends

Nenna had her physio assessment today.

She has very flexible joints in her hips, her knees, her ankles, her wrists and hands. This means that she is inclined to sit in the evil 'W' shape, which tends to bend the tibia, move the musculature of the lower leg round to the side and twist the foot. It is probably the reason she is in-toeing. We have to start a campaign to discourage her from 'bad sitting' and encourage 'good sitting'. On the way home, we bought some very cool purple boots with flowers on the strap that come up well over her ankle to give her support.

Her general muscle tone is very poor - she finds sitting up from lying down very difficult, for example.

She has poorly developed 'saving reflexes' - ie, she doesn't put her hands down either to the side (at all) or the front (a tiny bit) when she tips that way. She *does* compensate for tilting - we sat her on one of those big ball thingies and the physio held her hips steady on it whilst tilting it to and fro - she compensated for the movement by straightening her body, ie, keeping herself vertical to the floor. But she didn't put her hands out when she got close to the floor, as one apparently naturally should do.

She could not move her hands forward when she was lying across the ball, with her hands on the floor - because of poor muscle tone in her shoulders. She was compensating by trying to use her hips, but obviously that didn't work all that well.

We are being assigned a physiotherapist who will probably come out to her here at home. We'll also be able to do stuff with her ourselves - I am already sharking for an exercise ball on freecycle. Her swimming is also good for her. The physio said that she seemed like a good candidate for MAISEY, which stands for 'Multi-agency Identification and Support in the Early Years' and is about getting children what they need in their learning setting for their support and development and helping with the transition between nursery/school. She is going to send me an extra copy of her letter to let nursery have. Fab Nursery are already organising for a Learning Support worker to come out and meet Nenna and see what she can advise them to do to help her.

There was also, by happy chance, a Registrar from the Paediatric team at the hospital visiting the physio team today. She said that when we go back to see the consultant in September, they will look at the reports from the ENT people, the Physio team and the Speech and Language team (the physio is going to give them a poke, as we haven't had an appointment from them yet) and then they will know more about what is going on. Blood tests will naturally fall out of that, by the sound of it.

B and I are very tired - not least because we did child shoes and a male-family-members barber trip afterwards - but I think that we both feel satisfied that our observations about her development are valid and that there are definite issues.

Nenna liked the dolls' tea-service at the hospital.


  1. Oh dear, I wish I could help.
    You really do have to keep pushing all the services, just as I do, though in different areas.
    Good luck and lots of hugs.

    Red :)

  2. always found exhaustion at post appt time - and sought calories.


  3. Chez Nenna sounds as if she has been given a similar diagnosis to Nicc.

    Email if you need to.

    You've indentified it early and sound as if you are going to be given great support.

    Take care x

  4. Very good to hear that she's had the assessment and the wheels are turning. Don't know if it helps but you can get exercise balls (if it's the big ones which double-up for birth balls) in Argos for about £4.

    Hope the rest of the week is positive.

  5. It's a relief not to be fobbed off, and then to be agreed with. And to be shown how you can help Nenna, of course. Best wishes to you all xx

  6. Can we make this all about me for a moment? ;-)

    I've always had flexibility and always sat in the W position (I assume that's bum on the floor, legs in front but lower legs doubled back, so ankles are near your haunches- for want of a better explanation) and I in-toe on my left foot!

    I wonder if I had the same kind of thing as Nenna.

    OK, back to you and Nenna. Hugs.

  7. Can I ask something else, please? Do Nenna's knees over-extend? Mine do, so that when I have "straighten" my legs, my legs actually curve backwards. I know it sounds weird but I wonder if it's all connected?

  8. Doncha just love Mrs Mac, haha?!!
    Anyway, phew, for getting listened to and for all the planning and stuff to help Nenna with what she needs.
    Sounds like you need lots of cake,chocolate and yep, tea at the moment. Big hugs xx

  9. Stella - yes, her knees bend the wrong way, too. It sounds similar, doesn't it?

    I have tea. Didn't let it brew long enough though :(.

  10. Amazing. I've never realised all these things might go hand in hand.

    But I hope you can get Nenna all the help & therapy she needs and all goes well for her. Enjoy the tea. x

  11. Nenna is going to thrive with all this support. I am so glad they listened to you. No one knows a child better than that child's parents, and doctors sometimes think they know the child better.

    I didn't walk until I was over 2. Was in all sorts of hospitals. They finally told my parents I was just slow and there wasn't anything they could do. Technology has come a long way in 35 years.

    I have ventriculomegaly. It comes with a host of issues, but like Nenna I compensate for them. Daily. It is who I am, and Nenna will be who she will be, a wonderful child who thrives, and eventually an adult who succeeds!

    I wish Nenna all the best!

  12. Nothing much to add to the others but well done for getting the assistance you and Nenna need. Take care of yourselves.


  13. Excellent - the pre-school support service is the one headed up by an EP that I linked to before. Once they are involved you'll be much better supported and monitored and things will happen much more magically. Which sounds like just what you need.

    It's good that you've written about your new insight/realisation/strategies - next time things feel awful, don't forget to look back to this point to get some perspective back. Everything in life is cyclical... and, painful personal experience tells me that it's all too easy to lose sight of everything again.

    Do drop me an email if you'd like my professional opinion on anything educational/developmental at any stage. I'd be more than happy to help.