By all outward appearances, Kaylee is a normal happy, healthy 6 month old. We adore her and she seems to find joy in every day she is given. This is a picture of her in the snow for the first time - she's not sure what to think about it.
However, a couple of weeks ago, the cardiologist told me she does not have a spleen, which means she cannot fight bacterial infections on her own. Last week, she had her final tests run, which included a heart catherization to determine the pressure in her lungs and to verify what they had seen on the echos. In a normal heart, the pulmonary veins (these carry the oxygenated blood back to the heart) are attached to the left side of the heart. In Kaylee's case, they are attached to the superior vena cava (the tube that delivers the unoxygenated blood from the top part of the body back to the heart). This means that her oxygenated blood is being dumped in with the unoxygenated blood before it ever gets to her heart. They are supposed to be getting back with me today to give me their final recommendations, but when I pinned the cardiologist down last week, he admitted they wouldn't be able to do anything to help her - except to offer comfort measures.
As you can see by the following picture - so far, we're doing okay on our own.