SKYLAR UPDATE

THIS IS AN UPDATE FROM TRACY, SKYLAR'S MOTHER.


Skylar had her GI appt yesterday. She is still not gaining weight, actually she lost 2 ounces since she left the hospital. They have increased her diet to 27 kcal/ounce. The liver biopsy came back normal. Her doctor feels she has a metabolic disease, but one which does not originate in the liver. He has requested that we see her geneticist again to see what she says. He wants to see her again in two months, but wants her weighed every 2 weeks. If she is not gaining any weight he wants to know sooner. He says he will talk with her pulmonologist after her appt. on the 25. After which they may decide to do a PH study. So, we must wait again. We should be hearing soon about a consult to do an evaluation on her motor skills, so we can start PT before she gets too far behind. Her swallow study was this morning, and that went fine with no indications of aspiration. She is such a good baby and handles all of this so well. I will update again soon and will be putting some pictures up after I get them downloaded.