Just a few updates to share: we met with the GI today; he is one of the best doctors we have worked with. He has been in contact with NIH quite a bit and done a fair amount of research on Emily's condition and is very hopeful about this leptin treatment. He felt like the literature suggested that Emily might be able to gain a little fat back, as well as correct her metabolism. Emily's liver is still generously sized but he feels like it is not getting worse. He did say that we will need to repeat the liver biopsy at some point, whether it is thru NIH or him. He is also the doctor that recommended us to the Make a Wish foundation, who we met with on Wednesday. Emily's wish was to go on an airplane to see Cinderella, so we are going to Disney World! It will be a 7 day, 6 night stay that will include Sea World and Universal Studios. The Make a Wish foundation pays for everything, including rental car, food, souvenirs, etc. We are so excited to have something so fun to look forward to. It would be a MAJOR expense for us to do this on our own and the kids will love it. We have to pick the dates yet, but sometime after the summer, as we have to worry about getting to NIH first. And we finally got help paying for some of Emily's formula. We are so appreciative of any pieces of good news.
And I forgot to mention the other day that is was the 18th anniversary of my mother's death. This year it really hit me that she has missed more than half my life (it really should have hit me around 23 or so). It really has been a long time now and yet I still think about her all the time and wonder how different life and even myself would be if she were here. Well Happy Mother's Day to all moms!
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