A few answers

We are still in the hospital, but Eden is making a lot of progress. She has been able to tolerate her feedings today, and even though it's just a little bit of milk, it's so much better than nothing! We will be here the rest of the weekend to see how much milk she can tolerate so we can reduce her TPN. She is stronger, so she started back with PT and OT Tuesday. She can still get on her hands and knees! :) She is also starting to talk a little again. We won't really know until we get her home if she has actually lost skills, or just needs to be home and healthy to remember what she can do.

I asked for copies of all her records, and got them today. I wanted to know why they suspect MLD, and what tests they had done. It's impossible to get answers in language I understand. I found out she most likely has Celiac Disease, which is perfect b/c lots of people in my family also have it. I can definitely feed her gluten free food. I also saw the results of her genetic tests. She has a genetic abnormality, but it's one they have never seen, of course. And her urine test, usually the deciding factor b/c of extremely high sulfatide excretion, was only weakly positive. So if she does have MLD, it's a very rare mutation in a very rare disease. Which could explain why her symptoms aren't like many other children.

Thank you for your prayers!!