Today was the big day.....our trip to
Shriner's Hospital for Children
in Philadelphia to have
Darci's arm & hand condition evaluated.
We were so blessed that a local Shriner's group
graciously offered to
pick us up and drive us there!
We met them at a convenient location
and they drove us the 2+ hours to
Philly and dropped us off right at the door.
Now....I have to say that our Darci
is most definitely not a good traveler.
Ande & Kaci? Yes!
Darci? Absolutely not!
She was good for the first 30-45 minutes....
after that, I was scrambled to keep her mind occupied.
She cried, she whined, she squirmed
and she threw a major
tantrum until she finally fell asleep.
Once we arrived at the hospital,
things moved very quickly.
We met a family there with their
12 month old son who appeared
to have the same condition
as Kaci except that he was only affected on one side.
Soon our name was called and
we were sitting before the doctor.
He spent a lot of time just watching Darci.
Watching how she played,
watching how she picked up Cheerios
and watching to see which was her dominant hand.
He was very up front and honest and I liked that.
He told me that he believes in the 2/4 rule.....
"It's not what we can do to this child......
it's about what we can do for them".
He said Darci's condition is called
He said there are generally two accepted
modes of treatment for someone with this condition
One being that they move the
index finger to the position of the thumb so that it can function as a thumb
but Darci's index finger does not bend.....
the joint appears to be fused so moving it
to the position of a thumb would serve no real purpose....
it would only act as a "post"
and he thought, quite frankly, that she would be more functional just as she is.
Second....they frequently cast or
splint the wrist in an attempt to straighten it,
but in most cases
this is just for "looks".....to make the
arm look more normal.
He felt that splinting Darci's wrist
at this point would do more harm than good
since straightening it may take away some of her functionality.
To sum it up....the doctor feels that
Darci is extremely functional just as she is and he recommends that we do nothing...for now.
But he does want to see her once a year
to re-evaluate her condition.
He also told me that Shriner's can be a wonderful
source of support because as Darci grows she will
become more self aware and self conscious of her condition.
He also gave me some very insightful
advice on what we can do
as a family to help Darci...starting right now.
Shriner's can also help us with
any adaptive devices Darci may
need in the future.
After the doctor left, an occupational
therapist came in to show
us some stretching exercises we can
do at home to help Darci maintain
good flexion in her dominant wrist.
Lastly, we had an x-ray done of Darci's
spine since it is not unusual to find
spinal deformities in children with this condition.
Praise God, Darci's spine looks just fine!
The doctor does want us to have a couple
tests done back here at home to rule out
several potentially very serious medical
problems that often plague children
with this condition.
We hope to have those tests done within the next few weeks.
Please join us in praying for positive results!
All in all, I'd say it was a good day!
Keith and I had already discussed
the fact that Darci was functioning
so well just as she is that we hesitated
to do anything that may set
We don't care that Darci looks different
we love her just the way she is
and we do not want to put her
through any surgery or treatment
that would be for "appearance" purposes only
We will agree to surgery or treatment if and only if
it would improve her ability to function.
It was nice to hear that the doctor agreed!