The Plan

Well I hope everyone had a blessed Thanksgiving. We enjoyed our time together with family. Justin did not have to work (after 52 hours in 5 days he was ready for a break). And we were able to rest a little. Emily was not feeling well, unfortunately, so we took her to the dr. on Friday (her ear had been draining blood so I was concerned about a ruptured eardrum). She tested positive for the H1N1 virus, plus she has a sinus infection and ear infection. I do believe that after 2 1/2 weeks of sick children we have all (except Justin, knock on wood) had the swine flu. Everyone "seems" to be on the up and up.

We were able to get downtown yesterday to see the geneticist. Overall I was very pleased with her and how she is handling Emily's case. She said that we are dealing with the rarest of rare, so there really is no protocol to follow or other examples to go by. At this time there are no clinical trials going on that would pertain to Emily's situation, but there may be some in the future or information may come available from previous trials that would be helpful. At this point we are going to do our best to monitor Emily and try to prevent things from happening as best we can. Emily is going to have an echo cardiogram and ECG to check up on her heart, though the geneticist does not anticipate any issues there. She does not hear a heart murmur anymore. Then we will see the endocrinologist in January. He told the geneticist he thinks there is a medicine he can put Emily on that would help control the insulin levels and possibly help with the lipodystrophy (the last endo dr. said she wouldn't put Emily on meds because they metabolize in the liver and we don't want to stress the liver more). We need to keep her lipid levels under control to help maintain the health of her heart, and watch for any arthritis in her joints, but really the geneticist put the whole situation in a very positive light. Really all we can do is wait and see what happens, we really don't know what the future holds for her, but do we really know how the future will go for any of us? We just have to lean on God. Justin's work future is shaky, he was told to start looking for work, as there is only a month left at this current company. Really all we can do is deal with what we are given, "If God brings you to it, He will bring you thru it".