Hello Elaine,

let me start off by welcoming you to the list.    Your e mail concerning your
daughter caught my eye.  After reading your latest e mail I got the impression
that your mind is already made up.  Nevertheless please take note of these
suggestions, along with everyone elses.

First, experience has taught me to take doctors promises with a grain of salt.
Don't get me wrong I hope I am wrong and everything works out for the best for
your daughter and your family.  I don't know to what extent your child has been
effected by CP.  But I can tell you, that I have been promised a lot of things
that never turned out.  One example in the summer of 95. I had to get a referral
to a specialty clinic in Hanover (Germany).  Where I had to go through a general
doctor in order to get the referral.

He spent most of the time telling me that if I did as the clinic advised (which
was wearing braces).  I would never have to use a wheelchair, even for long
distances.  When I arrived at the specialty clinic I was told by the head doctor
that not having to use a wheelchair was not realistic and not to be expected.  He
said "you can not expect this."  Again I hope everything works out for the best.
But I would strongly suggest that you get a second opinion,  before proceeding
with the operation.  I just fear you have not been given all the facts.  Because
I have never heard of a 100% guarantee of success.  Also with my personal
experiences, I am guarded toward doctors' promises.  As I stated above.  Believe
me it is very demoralizing expecting something and getting something totally
different.

If you do go ahead with the operation.  May I suggest you talk to your child
about the operation beforehand.  Explaining your reasons.  I realize she is only
7, but trying to open a dialog may lessen her fears.  Or at least it did me
before having an operation.  I am Not a parent.   I am a 21 year old male, but
that's how I would handle it.  I am sorry this e mail is so long, better end this
now.  But whatever you decide I hope it turns out for the best.

Jan

Elaine Taylor wrote:

> Hi, yes, I could wait, however, I feel that she has missed out enough of her
> childhood.  I want to see her play hopscotch (out of her wheelchair), swim
> independently and than be able to stand in the pool when she's tired of
> swimming.  I think about when she's a teen and someone asks her to a
> sleepover and she wouldn't be able to go because she can't stand on her own
> to be able to go to the bathroom independently.  BTW, the doctor has told me
> that this will work 100%, no ifs and's or but's.
>
> We were discussing it tonight at dinner, and it kills me that I have to make
> this decision without her support, but I feel that as a parent, I must make
> decisions that will impact her future.  She's allowed to make decisions as to
> if she wants to wear her TES at night or not, and if she wants to do therapy
> at home or not, but this is to important of a decision to leave up to a 7
> year old.
>
> Elaine