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Jennifers Elizabeths very Special Page

Jennifer was born with Septo-Optic-Dysplasia ( Totally blind & missing part of her brain, The Septum Pellucidum & The Corpus Callosum ).She was also born with Turner Syndrome ( stunted growth )and anomilies of her arms and feet. She has thyroid deficiency, adrenial deficiency,cortizol deficiency,lipid problems, advanced osteoperosis,scholiosis,bronchial asthma,chronic sinisitus,chronic ear infections,migraine headaches,female hormonal problems, high blood pressure , salt deficiency,severe reflux,severe psorasis, chronic pain and muscle spasims.In other words, though she may be young, her little body is aging rapidly and she suffers ( painfully ) what most people take a life time to feel in old age.She is currently taking several different medications daily. Parents are George & Cheryl Weaver and sister Bonnie, twelve years old.Your our precious angel and gift from God Jennifer & we love you more then words can express.We are truly blessed to have you in our lives.Thankyou Lord for this precious child!!!!! You are a true insperation to us all Jennifer!!!We are very proud of you.October 2007, diagnosed with a somatrophin deficiency.::::::::::::::::::::::::::I Have Hurt A Thousand Times,
But Smiled Away The Pain.
I Am Courage.

I Have Faced Impossible Odds,
And Won.
I Am Determination.

When No One Would Listen To Me,
I Trusted In God.
I am Faith.

I Have Put My Life,
In Others Hands.
I am Trust.

I have Shared My Story,
To help Others.
I Am Inspiration.

I Have Fallen Many Times,
But I Always Get up.
I am Strength.

I Know That A Day Will Come,
When My Pain Will Be Gone.
I Am Hope.

I Am Courage
I am Determination
I am Faith
I Am Trust
I Am Inspiration
I Am Strength
I Am Hope

I AM JENNIFER!!


Birthday is 03/20/1985






WE LOVE & MISS YOU JEFFERY,REST IN PEACE www.caringbridge.org/fl/jeffery


REMEMBER: If this is your first time visiting or your 100th, please sign the guest book. Jennifer LOVES to read and keep all the messages in braille.THANKYOU & GOD BLESS YOU!!


CHECK OUT THESE WONDERFUL SITES!

www.online-angels.org
www.angelsofdestiny.net
www.netwish.org
www.blanketministry.com/prayerblanket.html

FOR FINANCIAL ASSISTANCE WITH MEDICAL BILLS,TRY:

http://groups.yahoo.com/group/getorgivemoney/




PLEASE VISIT THE PHOTO PAGE TO SEE A
PICTURE OF JENNIFER'S ROSARY'S,THAT
SHE HAS LOVINGLY HANDCRAFTED.THEY
HAVE BEEN BLESSED BY A PRIEST & ARE
AVAILABLE UPON REQUEST TO ANYONE
WHO REQUESTS ONE.MAY GOD BLESS YOU.


****HAPPY HAPPY 23rd BIRTHDAY JENNIFER****
( MARCH 20th )

Journal

Sunday, January 27, 2008 11:46 PM CST

I know that it has been a while since
the last update, so let me appologize
for that.2007 was a difficult year for
Jennifer, for all of us, both physically
and emotionally.It has been a true test
of our faith.Which I think that we passed.

As of now, Jennifer seems to be stable.
We managed the change over from pediatric
doctors to adult doctors.So that is finally
taken care of.We settled the insurance
issues.For those of you that don't know,
when Jennifer turned 22yrs of age, our
insurance company considered her an adult
and removed her from our insurance plan.
she was not covered for a while. We had to
prove to the insurance company that she was
handicapped and had special needs.We found
it to be very strange, because we have had
the same insurance for seven years and they
we're billed from her doctors all those years.
yet, we still had to prove it to them.

Last October, Jennifer was diagnosed with a
somatrophin deficiency.After all the tests
were in, what that means is that she has no
growth hormone in her little body.The tests
shhow she doesn't simply have low growth
hormone, she has NONE at all.She is a miracle
child.She should have not made it to be an adult.
As we already know, she also has no steroids.
Thank God for watching over her.

The treatmeny for somatrophin deficiency is a
daily injection of Humatrope ( synthetic growth
hormone ),Again we went a few rounds with the
insurance company and also the doctors office and
the pharnacy this time.Humatrope is injected
with what is called a pen.The pharmacy finally
got the medication,but it came without the pen
and they had no idea where to get one.The
insurance company told us we we're suppose
to get it from the doctors office. The doctors
office said it was suppose to come from the
pharmacy.Now you can see a picture of what we
went through.AGHHHHHHHHHHHHH, VERY FRUSTRATING.
I finally contacted the old pediatric endocronologist
and they put us in touch with a representative
from Lilly, the company that makes Humatrope.
They met us at the doctors office and brought
a pen.They showed us how to mix and administer
the medicine. Jennifer was shown how to do it
herself.She is really amazing,being totally
blind, she manages to measure the correct dose,
load the syringe onto the pen and using an
alcohol wipe, she cleans the pen and the injection
site on herself,She gives herself a shot every
night before bed.I will say that she has stuck her
finger by mistake a few times and she is quickly
getting tired of doing this everyday.She is
always supervised and either Bonnie, daddy of
myself are always with her.Considering that she
will have to do this the rest of her life,she
absolutely must know how to do it herself.
As her mom, watching her do this every night is
very difficult.

Anyway, we are just waiting to see what affect
if any,the new medication will have on her health.


I will not take so long in updating this page
next time.Also, at the bottom of the page is
our new address and phone number.Like I said,
it was a difficult year.

PEACE
oxo



********QUICK UPDATE*************
*******03/06/2008***********


Jennifer is profoundly sick.
Took her to the doctor, day
before yesterday.She had been
really complaining about being
very dizzy and nauseaous for a
number of days.All she wanted to
do was stay in bed and try and
sleep.Turns out that she has a
massive sinusitis infection.
SOOOOOOOOOOOOOOOO, here we going
again.Ten days of strong antibiotics
( 1000mg of augmentin ), which
makes her even more nauseaous.
Along with lots of fluids and
bed rest.She is such an amazing
kid and we are so truly blessed
to have a wonderful, kind,caring
doctor.He just adores her and so
do all the nurses.She always has
to give the doctor a hug and a
kiss before we leave the office.
He said that his goal is to keep
her as happy, healthy and as
comfortable as possible.He actually
talks to her and asks her what would
make her feel better,And he really
listens to her.Thankyou and God
Bless you Dr. Rahman for taking
such good care of our baby girl.

peace
oxox


FROM OUR FAMILY TO YOURS,
HAVE A BLESSED EASTER ALL!!!!


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Hospital Information:

Patient Room: PLEASE SEND CARDS & LETTERS TO:

Miss Jennifer Elizabeth Weaver
1152 South Confederate Drive
Lake WildWood, Macon, Georgia,31220
478-477-8044

Links:

http://smilequilts.com/jenniferw.html   ***********************PLEASE STOP BY AND CHECK OUT JENNIFERS LOVE QUILT*******************
http://www.specialchild.com/archives/dz-037.html   Learn all about Jennifers blindness.
http://www.turner-syndrome.com   Learn all about Turner Syndrome.


 
 

E-mail Author: weaver_cheryl@yahoo.com , ceweaver@cox.net

 
 

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