|This is Amazing!!!|
|My wife and I had no idea that this website even existed. I home today and just happened to stumble across it. This is great. We were told that our daughter Sophia would be born with scoliosis when my wife was four months pregnant. It was found during a routine ultrasound. They noticed with they thought was an abnormality on her heart and began to record the ultrasound and had a doctor look at the video. We were called back in a couple of days later and it was explained to us that she would be born with a "severe" case of scoliosis. Our daughter was born on the morning of August 24, 2006. We meet with a countless number of doctors before almost losing her when she had a bad case of "RSV". Kaiser who is our health provider didn't know what was going on so she was taken to Childrens Hospital of Orange County in Mission Viejo. She was there for one month and due to the top notch care she received, she made a full recovery. After that incident the doctor visits continued. We thought we were onto something when we were sent to Kaiser sunset to meet with Dr. David Apel, who is an Orthopedic Surgeon. He didn't know how to dianose our daughter either, but he did think that Dr. David L. Skaggs at Childrens Hospital Los Angeles could. These two hospital are seperated by about one block here in Los Angeles so we walked over and made an appointment. The day that we meet with Dr. Skaggs he walked in took one look at our Daughter and said that she had jarcho Levin Syndrome this was the first time that we had ever heard of this and at that moment we knew we were in the right place. That meeting took place 4 years and 4 surgeries ago. Our daughter is now 4 and will be 5 later this year and is doing great. she's very active trying to keep up with her older brother and trying to be a great big sister to her younger brother.|
Location: Chittenden County Vermont
|Welcome! I hope that you find the support and information here that I have from this wonderful community of parents and grandparents! Thank you for sharing Sophia with us. |
Location: Plymouth, Pennsylvania
|WELCOME TO THE 'VEPTR BAORD'...SO GLAD YOU FOUND US, AND THANK YOU |
FOR SHARING SOPHIA WITH US...
DX'S ARE SOMETIMES TUFF TO NAIL DOWN...ZOE HAS ACTUALLY A FEW, BUT HER MAIN DX IS VATER/VACTERL...
WE LOOK FORWARD TO HEARING MORE FROM YOU...GOD BLESS...
Location: Southern California
|Hello and Welcome! I am always thrilled to hear from other parents who are cared for at CHLA and Dr. Skaggs -- esp VEPTR patients. We've been with him now for almost 10 years and my son was his very first VEPTR patient... Hope to hear more from you. Take care. Wendy|
Location: Phoenix, AZ
|Hi. Thanks for sharing your story. I have found this site to be helpful and comforting and hopefully you will too. Good luck with all of your future surgeries with Sophia.|