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Thread: Panic!

  1. #16
    Join Date
    Feb 2004
    Location
    New Zealand
    Posts
    108
    [i]We've also been told we'll be called in for pre-op tests about a fortnight or so before. Can anyone tell me what these involve? - [/B]
    For my daughter's surgery there will be the usual pre-surgical blood workup and a series of "bending x-rays", which seem to be, well, x-rays while bending to the side. This apparently gives the surgeon a sense of how much correction is possible and they use this to determine the nature of the hardware (rods and so on) they'll use.

    Patricia
    New Zealand

  2. #17
    Join Date
    Apr 2004
    Location
    Brush, Colorado
    Posts
    89
    Hi Lorrie! I had herrington rods put in when I was 13 and can understand how hard this is! The post-op tests that I had included checking my breathing and blood pressure as well as final x-rays of my spine. There were more but those are the ones I remember.

    I remember that the adults had alot to say about the surgery, my mom was positive that I would be paralysed (I'm not!), but they never listend to me! If your daughter is able to express her feelings (some youngersters just can't do that very well) have her talk about what she's feeling. This is extremely stressful and frightening and children tend to bottle those things up. By the time of surgery the last thing I needed was more surgery talk! Perhaps working on those feelings she's living with would help get her to understand better. There's something about fear that blocks understanding.

    I wish that I was there to talk to her. I'd love to let her see my ramrod straight spine and let her know that everything came out just fine. It's hard and scary, but it turns out just fine in the end.

    God bless and keep all or you!

  3. #18
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Thanks folks.
    It's really hard for Geeve to express her feelings - she has not got a lot of speech and it's hard to get more than just 'sad' or 'fear' out of a symbol book. We have told her it's Ok to be scared and we're scared too - but that we'll be there to look after her.
    Maybe I should just encourage her to have a good cry rather than trying to calm her down straight away.
    I do take your point about getting sick of talking about it by the time you got to surgery. The trouble is G's understanding is quite limited and she needs lots of repitition for anything to stick really. I do want her to be as prepared as possible. She usually copes well with hospitals / surgery etc but this is such a biggie.....
    Lorrie.

  4. #19
    Join Date
    Apr 2004
    Location
    Brush, Colorado
    Posts
    89
    Sometimes having a good cry is the best medicine of all. Heck, even a little bity cry is good medicine! Perhaps trying to get her to understand that this like other hospital stays would help. It's scary alright, but it really does turn out okay. Just like other surgeries. And if things happen, then you'll always be there for her.

    God bless and keep you!

  5. #20
    Join Date
    Jan 2004
    Location
    Perth, Western Australia
    Posts
    16
    Lorrie,

    You might find it useful to get in touch with the
    Scoliosis Association (UK). They might be able to put you in contact with parents of children with learning disablilities, who have had scoliosis surgery. Their website is

    http://www.sauk.org.uk/

    Another possibility is the Rett Syndrome Association UK.
    (Children with Rett Syndrome have learning difficulties and muscular problems and frequently develop scoliosis)

    http://www.rettsyndrome.org.uk/

    Meg

  6. #21
    Join Date
    Mar 2005
    Posts
    41

    Regarding Lorries daughter

    Dear lorrie,

    My daughter too has to have surgery for her scoliosis, and she also has Cerebral Palsey. Marisa is 11 yrs old, I do everything for her and she is not going to understand this. i'm heart sick about the surgery, but I know it's the best thing for her. Risa

  7. #22
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Hi Risa

    It's good to hear from another parent coping with cerebral palsy - although Genevieve is a bit older than Marisa (17). Like you, I have to do everything for Geeve.
    Has Marisa had any other surgery? Genevieve has had quite a bit over the years but this is the biggest - and I don't seem to get any better at coping with it.

    Regards,
    Lorrie

  8. #23
    Join Date
    Mar 2005
    Posts
    46
    It sounds like you are doing a great job of explaining it to her. I think your request to the school to treat it matter of factly was perfect. Most kids can adapt to the reality if it is presented in a non dramatic manner without the adults acting scared. Easier said than done and sometimes that backfires because your kid thinks you aren't in tune with their feelings. It's never easy!!

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