Dr. Sasha said motorically she has just changed a lot in a short time. Her muscle tone has started to increase which she said she doesn't usually expect to start happening until around age ten. She agreed that all of the other things we have been seeing are different, but thankfully (that's a weird way to say it I think) they are not out of the ordinary. Things will just always change, for better or for worse. And that's all I wanted; to go to New York, have Dr. Sasha look at her and tell me that these changes were common. To us, these changes were devastating, but I thought they were probably nothing out of the ordinary, but I didn't know for sure. So, we just have to, as usual, adapt and move on.
The not-so-great news, Dr. Sasha was concerned with the weight loss and trouble eating. She said that regulating her breathing could help her be able to focus on eating more, but her ability to chew and swallow,which has been declining, will not get better. She said she will likely need a feeding tube in the not-too-distant future. We will watch her weight as she has the Pediasure more regularly and see what happens, but she needs to at least maintain her weight and definitely not lose more. The downsides of a feeding tube are obvious and I know it sounds scary and terribly medical, however, there are many positives that go with it. Lu will still be able to eat by mouth, what she can, but she will be able to get the calories and nutrition that she needs, plus as much fluids as she needs. I will not feel an overwhelming panic/urgency during meals because I know she is only eating a fraction of what she previously could eat, and meals will not need to last an hour or more each time because we will be supplementing with the feeding tube. This is not written in stone and we are just going to monitor her weight and check back in with Dr. Sasha in three months to see what her weight is doing and go from there.