Well, we had our neurometabolic appointment and they had a conference with all the brightest brains around. They all agreed that we will wait for one of her blood tests to come back before we do any other testing. That test doesn't come back until July tenth. However, they did all agree on that test being the most probable as far as a diagnoses. The prognoses for that disease is not good, so we are hoping it is negative. In the meantime, we will be doing physical therapy, seeing a nutritionist and scheduling some nerve testing at Dorenbeckers. We also found out that she has not gained any weight in the last month. We are trying to be aggressive with feedings but it has been difficult. I also want to let people know that if I have not called you it could be because I broke my phone and lost a lot of numbers. I will keep you all updated when any new news comes in..... Love, Amber