[ SHOWGSD-L ] About Kaitlyn
- From: Rbuffdogs@xxxxxxx
- To: showgsd-l@xxxxxxxxxxxxx
- Date: Thu, 19 May 2005 13:36:41 EDT
FIRST, FROM THE BOTTOM OF MY HEART....THANK YOU TO OUR GSD FAMILY FOR THE
RESPONSE AND LOVE FOR KAITLYN.
She saw some of the cards (she can only manage a few at a time) and for the
first time since yesterday morning, managed a weak little smile, with a quiet
"Wow, are these really for me?" It brought tears to my eyes, and was such a
welcomed repast from a very , very difficult night for her.. I haven't the
words to tell you ALL how much every email is appreciated. We are saving all
of
them into a special file .
I had several people asking what is Kaitlyn's condition or
diagnoses....at this time we have no diagnoses. She started having problems
as an infant,
failure to thrive, etc, development delayed, although she is 14 (and only 48
pounds) she is for the most part, cognitively about 6 or 7...she cannot
read, nor write, nor tell time. She does however have a love of animals, and
they , of her...they just "know"...you know? She does pick on her little
brother, and usually they play happily together, lol. She loves dogshows, and
all
her friends there, its about her favorite thing ever, well that and Christmas
,which she keeps all year.
She has been seen by some of the finest doctors, geneticists and
orthopedists in the world. Her last specialty consult was with a doctor that
Cedars
Sinai flew in all the way from New Zealand to see Kaitlyn. He is a researcher
on
the human genome project, and thought she may have a very rare disease called
Melnick Needles Syndrome , about 35 people worldwide are known to have
it....but after a lengthy consult, and exam, and what a terrific staff Cedars
has!!! No, it turns out, she does not have that syndrome.
The Chief of the International Skeletal Dysplasia Unit, and of Genetics
at Cedars believes that Kaitlyn may have a disease much rarer than that....at
this time they are working furiously with a worldwide database to try to
fine ONE other person that matches her symptoms.....if they cannot...they are
going to name a new , one of a kind disease for her. A dubious honor , at best.
Her fractures started in 2000, until then she was walking , running ,
jumping, like any other kid. Because of the fractures she is mostly wheelchair
bound...its heartbreaking .
Her tibia (shinbone) and fibula t(he one next to it) are TINY. If you
removed the INTERIOR stick of a Bic ball point pen, the part that holds the
ink, that is how big around they are.Only about 3-4mm in diameter. Like a
bird. Each time she fractures, her legs bow.
Yesterday makes her 28th and 29th fractures since April 2000. Her
angel of an ortho surgeon has managed to insert tiny 1mm wires into her
delicate
bones....but yesterday when she fell she bent one beyond repair...so surgery
is probably going to be mandated. It is not pleasant, and is as serious as
her doctor put it, as being involved in a major car accident.....scary
business. Don't know what they plan on doing with the leg who's "rod" is still
intact..she will be spending the next 2-3 months after the surgery if they do
surgery... in a mid thigh length cast on both legs, then walking
casts...helluva
way for a little girl to spend the summer.
Just for added "fun" she also has a worsening curvature of the spine and
EVERY disc at ever station of her spine is bulging, they cannot fix it
surgically , the risk of paralysis is too great.
She also has progressive hearing loss, both ears, and wears hearing
aides....she loves music, really loves it. So as you can imagine, I am only too
happy
she can still hear it....so the music can be blasting coming from her
room...and no one minds, lol.
She is a role model of courage, and heart, and determination, and good
spirit. I aspire to be that brave....I fall miserably short of her
attributes...she is my Special Peanut.
I will update you wonderful folks, as soon as I can.
God Bless and Thank you for your love and well wishes.
Kathy and Kaitlyn
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