Galactosemia

Oh sweet child of mine, you have been poked and way more then anyone your tiny size should ever have to. Nonetheless you have been a real trooper. You are far healthier then anyone expected and you are a fighter.

Let's put Molly's heart condition on hold right now, after all there isn't much we can do while we wait for her body to either close up the hole or not. So in the meantime we are dealing with something new.
Last week I got a call from the pediatrician and he said there was a potential problem with her newborn screening. He wanted us to meet with him the next day so we could talk about her results. After meeting with the pediatrician we learned that Molly has galactosemia. Galactosemia is a rare genetic metabolic disorder that affects an individuals ability to metabolize the sugar galactose properly. We don't know exactly how serious Molly's case is but we know her body is not producing enough of a certain enzyme that is needed to break down and digest lactose. Friday Molly had several more blood tests done and we should get the results back sometime in the next 2 weeks. As soon as we get that back our pediatrician is going to talk to a metabolic specialist (which there isn't one in Corpus so we have to talk to the one in Austin) about what Molly's needs will be. We are hoping that her case isn't very severe and so far with the testing that has come back that is what it looks like. This means that the only real change will be in her diet. Right now we put her on a soy formula because breast milk is no longer an option since she can't digest lactose. As soon as she is on solid foods we will have to adjust our families diet to cut out dairy. It's going to be a drastic change for us but if it is what Molly needs to be healthy we are happy to do it.