Tuesday, August 31, 2010

Updated Measurements

Age = 10 months
Weight = 12,79 pounds / 5800g
Height = 25,2 inches / 64 cm
Head circumference = 17,32 inches / 44 cm
Chest = 15,75 inches / 40 cm

It seems that Raul has only gained one pound in the last 5-6 months. He is below the 1st percentile for weight and height, and in the 7th percentile for head circumference. I emailed one of the doctors who has been following his case, and she said, "That is really concerning because kids with EB have a lot of malabsorption issues. Often they have to have g-tubes. He really needs to be seen by an interdisciplinary team." We really need to get him here soon, but there has also been some question on the Romanian side about blood tests he had a month ago. They showed that he had high platelates, so he was put on blood thinners. He will need to be tested again before he travels. There was also mention from the Romanian side about how he might need to fly with oxygen, which I don't understand (I think it was supposed to be related to the blood tests).

Monday, August 16, 2010

The Many Faces of Raul

Raul's Story

Raul was born in Barlad, Romania, on October 19th 2009. He was born with the genetic condition Epidermolysis Bullosa, as was his sister who passed away at one month old. He lived in the hospital for four months, when he was then trasfered to Tutova Clinic. I met Raul the day he arrived in Tutova, and immediately fell in love. At the time he was in very poor condition, and his condition was not widely known in the area. I was in contact with doctors in the United States during my time in Romania to help find ways to improve his quality of life. Once home I began working on getting Raul a medical visa to come to the U.S. for a short time to receive more expansive testing and wound care. Finally in early August I got the email I was waiting for, and Raul was accepted to Massachusetts General Hospital and Colorado Children's Hospital for free medical care! We are now working on getting together everything for his medical visa, and hopefully he will be traveling in the upcoming months!