Tatyanna's Hope

Unfortunately it has been a relatively rough week for our Tatyanna. Despite our attempts to keep her eating over the last several weeks it has become obvious that intervention will be required. After much discussion we made the decision that it is time to have a g-tube placed in order to give Tatyanna the calories that she needs to function. Over the last few weeks she has been drastically losing weight and has lost any desire to eat....despite my spiking everything with whipping cream and butter. :) Her energy levels are almost non-existant and there are times when she has difficulty holding her head up or even staying awake. We are hoping that once she recovers from the surgery that she will regain some of the ground that she has recently lost and that this recent regression in her condition is not due to disease progression. Please keep our sweet girl in your prayers. She is a fighter but I know that her body is tired and that the effects of the general anaesthetic can cause significant regression in some Batten's kids. I will do my best to post some sort of update from the hospital post-surgery.