She was born on April 3, 2006, weighing in
at 5 lbs 5 oz. She got sent to the NICU because of
low glucose and that is when they found her heart
problems. They did the echo on her 2nd day of life and
by that night we were answering all kinds of questions
like was any of my other babies small like her, does she
look like any of my other babies. They sent her blood to
a lab in Utah (we live in Idaho) for the FISH test.
One week later it came back positive. She has had a rough start but it is getting better. She is 7 months old now. Debbie has been going to physical therapy along with feeding evaluations since she was 2 months old. She has been admitted to the hospital more than a dozen times anywhere from failure to thrive to severe reflux. We finally got her admitted to a bigger hospital where she had surgery to fix her reflux and she is now up to 11 lbs.
We just got word that her last echo looked great and that everything was looking good. For once in her little life she is starting to have somewhat of a normal life. She does have a PEG tube which as of right now she only uses at night. When she was in the hospital for the surgery I didn't think she was ever coming home. She stopped eating, lost weight and they had to put in a central line that took the Dr. 20 times to get it into her small veins. She was also incubated for 3 days and tied down to the bed with soft restraints. She was so drugged she wasn't allowed to come out of her sleep, which was good for her because when she finally was awake all she did was cry for 2 weeks straight.
When she was finally able to eat, she ate like it was her last meal. She hasn't lost weight since. Little Debbie is working on eating baby food now and learning how to roll over. We are so proud of her.
As parents, we love her unconditionally, but we had no clue how hard it was going to be. We live in a town of 400 and no one has even come close to hearing of Williams Syndrome before. I would love to hear from anyone with input. I know we still have a long way to go, she is still so young and so many people around here have their own opinion about her.
You can see more pictures of our family and of Debbie at my website www.myspace.com/krodhas7 or email me at cinnamon83301@yahoo.com
