Paper Lanterns

Carmen update: I spoke with Carmen’s gastroenterologist today and all of Carmen’s blood work came back fine. No problems at all. The doctors think that Carmen is leaking fluid from her vessels to her body tissues. The conclusion is that this leakage is causing the chronic diarrhea and swelling. (I think I got that right!) We did add fiber to her formula but the diarrhea continues. The nutritionist is going to call tomorrow with a plan to decrease Carmen’s calories and fluid intake.

The gastroenterologist said that the leakage is not something typically seen in Tay Sachs patients. She added that Carmen does not have classic Tay Sachs so who knows if this is something seen in Tay Sachs AB Variant patients. There is no one to compare her to.

The positive is that Carmen does not appear to have C-diff. So, no one is going to catch it from her! The negative is that she will most likely have diarrhea for the rest of her life! If we ever have another newborn, I will never, ever complain about all the diaper changes.

Monica the Magnificent and Lauren made these paper lanterns a few weeks ago. Monica is the craftiest person I know and she has a very willing apprentice! Every Wednesday afternoon they work on a craft project. Thank you Monica!