Wednesday, February 24, 2010
Friday, February 5, 2010
We also got the results from the cardiologist for the other two babies, Qing and Long. Apparently, both do have heart defects. Qing's heart problems are not serious, so what we have been seeing is more likely a result of his prematurity than anything else. But Long's heart defects are very serious, and the doctor's opinion is that he is inoperable. It's too early now to know the whole story; he'll go back in a month for follow-up. But sometimes (too many times) we are told that a baby is "inoperable" when the baby also happens to have Down Syndrome - like baby Long does. It's hard to know how much bias there is against "wasting resources" on these babies, and how much is real medicine. One thing's for sure... this work is never easy.
Thursday, February 4, 2010
We are very grateful for those who shared their time and talents with our babies. Although we don't know your names, we want you to know how much we appreciate your gifts!
Tuesday, February 2, 2010
Monday, February 1, 2010
Babies with epidermolysis bullosa (EB) are often called "butterfly babies" because their skin is as fragile as butterfly wings. Our little Bo arrived in September with what looked like a severe burn on one of his legs. Knowing that such a burn was not typical of tiny babies, and having experience with EB in the past, we immediately suspected he might have that diagnosis. Specialists at a the international hospital confirmed our suspicions and we began treatment at our Beijing Home. Baby Bo is fortunate that his type of EB is a rare, less severe form of the disease and is generally confined to just one leg. He does blister easily on other areas of his body, but not nearly as severely as this disease often manifests with other children. It is not curable or treatable, except for dressing the wounds as they occur and preventing infection while they heal.
He was a very tiny 5 lb infant when he arrived, but he certainly doesn't look like a "butterfly baby" anymore... actually, he's starting to resemble a little sumo wrestler! He has the most beautiful little face, don't you think?