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What are we waiting for?

December 17, 2008
This week we are in the hurry up and wait mode. We are waiting to hear from Lucy's metabolic doctor on what the next steps will be. The last few weeks, including this week have been filled with doctor appointment after doctor appointment. In fact, I don't think that we have had a week since the the middle of October where we haven't had a doctor appointment or two, or three, or four... We have seen all the specialists that we need to see at least once now. We added hematology to the list last week as some of Lucy's labs are showing abnormal results with her red blood cells. We are not exactly sure if it is something we need to be concerned about, we are waiting to hear back from either the endocrinologist or hematologist on these. Lab results from the last few weeks are confirming what we have know for sometime, Lucy's liver function tests are coming back abnormal as well as several others. The liver is one of the organs that is often affected when a person has a metabolic disorder. One of the symptoms of SCHADD is hypoglycemia, in last weeks labs Lucy had an abnormally low non fasting blood sugar. We are now testing her blood sugar randomly to see if this is something that is occurring for her on a regular basis. Drew and I keep reminding ourselves that we are doing everything possible for Lucy right now. There is really nothing that we would be doing differently if we had a confirmed SCHADD diagnosis. Still, we wait...
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