[tri-wings] Re: introduction

Hi Robin  -

I am (Ugh, just turned!) 35, I know to some I may seem young but it seems to 
keep creeping up on me!  My husband and I live in Washington State.  I don't 
do sales, I hate sales also!  Although I have been told that I do pretty 
good at it, I just think it can be so dishonest some times and that is so 
not me.  I actually monitor Bone Density (DEXA) machines to make sure they 
are performing acurately.  These machines are used to monitor bone loss/bone 
gain for mostly Osteoporosis drugs.  We work with Pharmaceutical's to make 
sure that the scans are accurately monitored.  Well, it is very complicated 
and I have to make sure the machines all over the world are running properly 
and if they aren't, I have to investigate why!  It is a very fun and 
interesting, techy type job!

Savannah (I happen to love the name also lol!!!) was born with Full Trisomy 
18.  She was diagnosed pre-natally.  They of course told me that she would 
never survive the birth.  I set out to prove them wrong and of course we 
did!  I tried to get all level 3 ultrasounds and fetal echo's done before 
she was born so that we would know what to expect.  The doctors were ready 
and willing to accept whatever would happen.  I had her for 6 months and 3 
days.  She came home when she was 11 days old.  What finally took Savannah 
is that she had Primary Pulmonary Hypertension.  She was born with an ASD 
and a VSD, the ASD was small, but the VSD was quite large 1.1 cm.  We had a 
wonderful surgeon that felt because of how well she was doing, he was going 
to try to repair it if the pressures in her lungs would keep up.  However 
when they did a heart catheritization in April 2001, we found out that the 
pressures were too high and they could not bring them down no matter how 
they tried.  She was on O2 all of her life.  So, we knew that we just had to 
enjoy every day with her and it was God's time and his choice.  The Good 
Lord blessed me with her for 6 incredible months.  She brought incredible 
doctors, nurses, nutritionists, therapists, and support people into our 
lives that changed the path of my life forever.  She also changed the minds 
of those same people.  She was born in Corpus Christi, TX.  Her care was 
through Driscoll Children's Hospital there, they were an incredible team. 
The Heart Surgeon that was going to perform her heart surgery is one of 
those doctors that goes to Mexico and performs life saving surgeries for 
those less privileged.  I am forever grateful and thankful.

Anyhow, Don and I have been married for 3 years now (we just celebrated our 
3 year anniversary November 1st!).  I knew the night that I met him that I 
was going to marry him and four months later we were married.  i would have 
married him right then and there if i could have, however that is a whole 
nother story that I don't discuss!  :o)

Boy, you really got me talking tonight.

Savannah would have been 5 years old this year.  My step-daughter Cameo, she 
is just over one year older than Savannah.  (Cameo is a Christmas baby and 
turned 6 on Christmas this year).  The great thing is that Cameo always 
talks about her "little sister".  Even though Cameo and Ashton (my 8 year 
old step son) never were able to meet Savannah, they have seen many 
pictures.  I also wear a necklace (a cameo necklace) that is of a mother 
holding a baby and it was given to me the Christmas that Savannah came home. 
It is my memory of Savannah that I always carry with me.  Cameo always talks 
about Savannah and boasts about the fact that she gets to share her birthday 
every year with Savannah.  Both kids love their little sister and love the 
fact that they have an Angel Sister watching over them.  It is so sweet.

Anyhow, I pop in every once in a while although I read the mail almost every 
day.  This weekend is the kids weekend and we will be celebrating Cameo's 
birthday.  (Always separate Christmas and her birthday and her Mom 
celebrated it a month early so we are celebrating a little late!)

Have a great night!


Darcy - Mommy to my sweet angel, Savannah Kristyne (T-18 ^i^ 12/12/00 - 
6/15/01) wife to my wonderful soulmate, Don.

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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