this is also on her carepage.. I just cant type it again, so I will copy and paste~
the news was good and bad. Bad news is that although she is not in "liver failure" yet, they do not anticipate her being a candidate for liver transplant. So we think that we are going to try to come up with the funds and time off work (jay, not me) to go to Denver and see the mitochondrial specialist there..as well as his team of other specialist that deal with this disease. We know he is not going to offer a cure or anything, but just some insight from someone who is wise to the subject.. So with out divine intervention via a miracle, we are going to lose our sweet baby to this.. we don't know when, hopefully we have more time for her being healthy and enjoying her.. its hard to wrap my head around all of this and I feel completely broken, but miracles happen every day, right?
Good news is she is pretty healthy. Her weight is down in the 3% area, so we are going to try a higher calorie formula and eventually a feeding tube to help her gain weight and to keep her sugars up. He did say that her liver is only at about a 10% loss right now, and said it surprised him, he was expecting it to be much worse. We are also going to start physical therapy to help with her muscle tone.. this is all alot to take in, but we were some what prepared for this.. please just keep praying for her.. she had lab drawn today and they did not draw enough, so we have to go back tomorrow. She is also going to have an EEG and MRI done soon, along with several appt's to GI, neurology and back to Dr Kayser in 2 weeks.