Friday, March 2

Star Patient

A proud moment today as Wriggles crawled onto the trampoline at our rebound therapy session and her physio Jemma exclaimed she was her "star patient". This is brilliant news and such a boost, after more weeks of food refusal and a bug creeping in. Although Wriggles is the most able member of the group, it is still lovely to hear that other people are just as proud as me and see ever little change as a huge cause for celebration. The extent that the hydrotherapy lessons have helped Wriggles explore her legs and strengthen her torso and core muscles has surprised everyone.
We were referred as the physio team expected it to have a good impact but none of them expected to see results so quickly. In the next few weeks she will be fitted with gaiters too which should help further and hopefully see off having a splint, which is otherwise the next move. I am nervous about the gaiters as I do not yet know how frequently she will have to wear them and am apprehensive as although I know they are to help in the long run, am not welcoming having to be the wicked mummy fitting them on and causing her discomfort.

We are still at the point where it is not clear if Wriggles' high muscle tone tendency is a development 'quirk' related to her prematurity or is a precursor to a diagnosis for something more long-standing. Both the physiotherapy team and her consultant are sitting on the fence until there is more clear evidence, which at times is a long hard slog, as without a label there is help and understanding we can be denied. What is clear though, and a relief, is that even if we do get a diagnosis surrounding hypertonia (abnormally high muscle tone) which would most likely rest in cerebral palsy, it is a relatively mild case that would only really affect her left leg and one that certainly would be well managed by regular physiotherapy and would be unlikely to cause her more severe problems throughout life. It may well be the case that within the next year, this becomes a distant memory as she achieves things at a slower pace, but ultimately proves that her development was just having some wobbly moments and none of the above is applicable long-term. Here's hoping!

But for now, on another good note, Wriggles ate one and a half petit filous pots and two whole Quavers at snack time, and a crumb of biscuit for tea last night. This might sound small, but for us this is Big News. Hooray!


  1. Oh it sounds like she's doing fab, I am so pleased :-) there's a little girl in our bliss group who has a very mild case of cp, her twin is unaffected. I wouldn't have known though, had it not been pointed out to me.

  2. I've just realised, the above comment could be deposited in to the ' trying to make things better category' yes, I know you know the type
    ' my uncles cousins brother had a baby born that size...' - I so don't want to be in that gang! - what I actually mean is, watching your preemie grow and develop is an anxious time for us, full of mixed emotion,on the one hand our love is completely unconditional, we are
    prouder than proud but the prospect of a label must be utterly terrifying,and it also sucks that our children have to be put into a box before they can get the help they need. With that said you have never failed to rise to any of the challenges you've been faced with so far, ( and goodness knows there's been a few!) so I have
    Every confidence you'll get through this too.
    Amy mouse- you should be really proud of yourself :-D x

    1. I didn't take it that way at all! All other lovely or premmy mums are exempt from that catergory :) and you've hit the nail on the head with the prouder than proud yet terrified bit! And thank you for your wise and wonderful words xx