Ellayna Gallis Journey
Newborn through Age 1

I was born on July 20th, 2004 at 3:42pm in the Miami Vally Hospital in Dayton Ohio. I was born six weeks premature by "C" section and had problems right from the start. I weighed 6lbs. 8ozs. and was 19 inches long. I had almost 7 ozs of fluid in my chest that pushed my heart to the wrong side and colasped a lung. Many prayers were sent up on my behalf and they were anwsered. I spent 36 days in the Neonatal ICU, "NICU", of the Miami Valley Hospital. It was there that I was diagnosed with "Klippel Trenauney Weber Syndrome". But as you will read below that has been changed in May of 2005 to a different disorder called "Cutis Marmorata Telangiectatica Congenita" or "CMTC" for short. Many of the first symptoms were the same as KT, but over time they have ruled KT out. But more on that later.

Ellayna in NICU July 2004

One of the many things I deal with is the growth of my left leg. Although everything on my left side is larger, my leg is really noticable. I also have a few "Port Wine Stains" but for the most part I have what's called "marbling" on 80% of my body that's caused by extra blood vessels in the surface of my skin. These may or may not fade with age. We also have to watch for "bumps" in my lymph nodes as these may be affected also.

In March 2005 I was admitted to the Dayton Childrens Hospital because I had E.coli bacteria in my blood. It was found there after I went to the emergency room with a fever of 103 degrees. I spent ten days there and met many wonderful new friends. Be sure to check out those photos. It came into my blood through my kidneys from my bladder, which I had a small infection at the time. I have a condition where part of my urine returns to my kidneys when I wet my diaper, and this carried the infection. I am on a daily dose of anti-biotic for one full year and will be checked again to see if I still have this condition with my kidneys.

On June 25, 2005 we attended the NOVA Conference in Raleigh, North Carolina. NOVA stands for the National Organization of Vascular Anomalies. There were Doctors from Boston, New York, California, Ohio, and Arkansas to name a few. All specialist in their fields. They were there to share their knowledge of the lastest in care for people with vascular disorders. I was also seen in their clinic where it was confirmed about my condition. Be sure and look in the photo album at the bottom of the Home page and go to the NOVA PICS in the place to choose a category. They each have "my" comments with them. Enjoy!

I bet other kids got the summer off didn't they. Don't fib now. I had to keep up my schooling/therapy. These are my friends from "Help Me Grow". They come to our house to help me develope my motor skills. I see them once a month during the summer, but each week during the rest of the year.

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