Thursday, 8 May 2008

Not the best of days

Strength for today and bright hope for tomorrow?

See this?
And this?

And this?Not for much longer, you won't.

We saw Little Fish's spinal consultant today. She now has scoliosis with a 25 degree curve. He expects this will deteriorate, probably relatively quickly, and that she will need major surger for it at some point in the next ten years. Bracing is not an option, so the only thing we can do to help slow the curvature down is to ensure she is always sitting in chairs with good lateral supports. No sitting on the floor, no sitting on a stool, no sitting in her manual wheelchair unless laterals can be fitted. No classroom chairs, no settees, well you get the picture.

Anyone want to try to explain to Little Fish why she can't do something she actually can do? It's hard enough explaining why she can't use the trampoline/bouncy castle/climbing frame...

The day did not start well - Mog was fitting and having breathing problems from 2AM until sunrise. The post wasn't great either - Little Fish has minor surgery booked for the end of the month, during our half term holiday. She needs it, it's good that it's happening, but the timing could be better. The messages on the answerphone were all to do with problems covering our care shifts (Staff off sick and on holiday). A friend has had major brain surgery today. And now this.

So, if you've got any really bad news, could you throw it at me now please, I'd rather get it out of the way.

Tia

8 comments:

Robyn said...

i was really sorry to read this Tia. It all sucks...I am sorry...
sending love to you and the girls
Rxx

Tina said...

oops.sorry I should read your blog before hinging to you....
sending much love I dont undertand the reasons but I sympathise with the heartache.
Much love

Tia said...

Whyever? Just because I'm having a bad day doesn't mean you can't be having one too!

Tia

MOM2_4 said...

HUGS!!!

Claire said...

Don't know if this is any use to you:
www.scope.org.uk/downloads/factsheets/word/lycra.doc
but it seemed to help my niece, who was operated for scoliosis recently.

Doorless said...

Tia,
I am so sorry that you are having it all come at once. Personally, we kept Amber braced which is what the support in the chairs would do and it did not keep the scoli from progressing. I would not keep her from doing what she likes. I might limit it a bit but I firmly believe in quality of life. She is a little girl and should be able to enjoy doing what little girls do as much as she can. I pray your friend heals nicely.

Becca said...

Awww, man. Sorry, Tia. Sorry, Little Fish.

I think you need to look into things like floor sitters or corner chairs, both of which are the most portable lateral support you'll get.

She will be fine to keep using the manual chair, I added a solid-base back with lateral supports to my active chair about a year ago with great results and I'm sure a paeds version of same is available. If I remember the company I'll pop in and post it for you...

Hang in there, the pair of you. Xxx

Nutty about Scoliosis said...

Hola Tia

I have scoliosis and had my surgery in 1989 for a harrington rod from T5 to L1, in Hampshire. I now live in Spain. I am sorry to hear about you having a bad day and I hope you can get to see the specialist and push on forward.

Have they suggested any type of physical therapy to build muscle strength while you wait for the appropriate time for surgery?

She looks like a very happy child and the images you have of her are great :)

My husband and I are in the process of adopting a child from China and completed home study etc last year, we are due for a year's review in the next couple of months.

Be well and take care

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