- Hi Sandie,
We also heard that there were not enough Doctors to hold the
Seattle Artho Clinic and are also on for the Fall Clinic.
In answer to your question, our daughter's wrists are also quite
bent (see photos on her site) www.adoptionfamily.org Josepha's
wrists can be fully extended with passive therapy, but once you hold
her wrist in extension and ask her to use her hand, she has less
ability and strength. That's because the way her muscles were
formed, work better in the natural position she was born with.
Doctors have said the same, because her function is so great they
don't suggest surgery. I agree. It would be a cosmetic surgery
verses a useful surgery, as they cannot promise her more function
when she can do so much right now. (again, website shows all).
I have a problem sometimes with some of the surgeries they want to
do because the way I understand it with our daughter, this is how
she was created and using her arms and hands as they are is what
is 'normal' for her. She has much confidence in herself and
doesn't necessarily want to conform to what the rest of the world
calls 'normal'. Especially when it will not enhance her mobility.
She doesn't care very much to what other people think. Her best
friend does. She very often comes to our daughter's defense by
saying, "What are you looking at??!!!" Josepha prefers to offer the
gawker a big, understanding smile and responds to inquiries by
simply stating, "I was just born this way." We no longer have the
elbow problem because therapy has given her full flexion, however, I
have heard of some success's with this type of surgery.
I guess I'm just saying that you need to hear assurance that
surgery will provide better function or just pass it up and continue
to raise the confidence level of your child while she is growing up.
Its wonderful to hear that Teja is doing so well and can do so much.
And I think I remember you saying she was only 7. Our daughter is 9
and her function just continues to grow and expand with age.
--- In firstname.lastname@example.org, Sandie Dozark <sdozark@y...> wrote:
> I was not sure if I had wrote you back or not. So if this is a 2nd
reply I appoligize. We now are on the list for the clinic on Oct
29th. Dr. Song does not have any openings until Nov 4 so we will
have to stay for a week. We will see the rest of them at the clinic.
Dr. Song is great.
> I have a question or delima for us. Teja is affected in her arms
and legs. She has wrist that are turned inward and both of her
elbows are bent. I do not know to what degree they are bent, I would
have to look it up, but it is enough that we worry about them. Teja
can do alot of things on her own. She can feed, drink, write, color,
drive, ect.... but we wonder what would happen if she were to have
her wrists and elbows released so that she would have better rom.
The doctor says to leave it alone, since she can do so much now. I
hear of releases when the arm is strait but not when the arm is
bent. Has anyone had any experience with this. I am also afraid that
if they stay bent that her joints will just get stiffer. She wears
hand splints and has elbow splints but would prefer not to wear
> Thanks for any info.
> Sandie and Teja
> cricket_lighter <jnjakubos@h...> wrote:
> I just got off the phone with Karen Peterson and she said
> that there wasn't going to be a summer clinic. You may want to
> double check to make sure your appt. are still on. Also the phone
> number has changed a little 206.987.2000.
> Do you see dr. Song(sp)? He is a spine Dr.
> Karen is going to send me a packet. But I was wondering
> we need to bring her complete medical history records? Because
> could take some time to get. We've been lots of places and seen
> of people. I guess the packet will answer my questions. It's
> of exciting to be seeing a Dr. who knows about AMC.
> Thanks for the information
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