Owen's catherization has been scheduled for April 6th. The day before he is going to go in and get blood work, xrays, and all kinds of other fun things for a 5 month old.
He hasn't been taking his medicine very well recently. He'll even gag himself to throw it up later. We tried putting it in rice cereal and baby food. Owen is not that easily fooled. So we still have to stick a syringe in his mouth and try to outsmart him. Sometimes he likes to wake up around 4 in the morning and talk at the top of his lungs for about 2 hours.
His bilirubin levels are constantly changing. One day he looks like a rubber ducky; the next day not so much. A friend that we met through one of the AGS sites told us not to worry about his color and just how he is feeling. It was very helpful advice. He's under enough supervision that if the day would come that he would need a transplant; we wouldn't miss it.
A friend of a friends baby just passed on this past week. I can't imagine what that must be like. You can check them out and offer them support at http://www.fretzfam.blogspot.com/