We made it!!

We had quite the whirlwind trip, but we made it there and back in one piece. Thank you for your prayers: security was uneventful, Emily stayed healthy, and we made it to all our shuttles and flights. Emily loved the plane, she slept on the way there and never complained about her ears. The only bump in the road was that they messed up our lodging, but they graciously put us up in a hotel in the area. So once again we are playing the waiting game, but hopefully the outcome will be a good one. We met with two of the doctors in charge of the clinical trial and they are very interested in having Emily in the trial. We have to wait for some lab work to come back, which could take several months (it is more genetic testing, along with lipid levels and such). After the lab work is back a panel of people will decide if Emily is eligible for this drug. This drug (leptin) has been given to people for over ten years now, but it was just approved for children 6 months and older. So far NIH has only had a patient as young as 7, but while we were there was a child younger than Emily who was getting started in the trial. The drug is not dangerous, it is a naturally occurring hormone made by the fat cells, the doctors just don't know what all the outcomes may be for a younger patient. They basically said they couldn't make any promises, but they did say that leptin does not help restore the fat that has already been lost. The goal of giving Emily the drug would be to keep her healthy. Hopefully it would help with the enlarged liver, but it should also prevent diabetes. We were very happy with this news, and the doctors and the hospital in general. So hopefully we will spend a week there this summer so Emily can undergo the tests needed to start the drug. In the meantime the nutritionist is changing her food again, to something that is even more broken down and will hopefully be covered by a children's program. Justin begins his class tomorrow!