Holding On

Well, I've been trying to compose a post now for about an hour but I can't seem to keep my train of thought.  It's been an exhausting day trying to get caught up from this past week and get ahead for the coming week.  It's shaping up to be another big one. 

I am anxious about getting Sam's results and the genetic results as well.  The doctor wants to scope Spencer because he too has so many GI problems but I'm not sure when we will tackle that.  Spencer has been doing pretty good, better than he has been.  I am hoping that the Chrohns meds have been successful at stamping out the inflammation. 

As soon as I get the genetic tests back then we schedule the next round of testing.  If genetics comes back positive for POLG then we start the lame treatment for that.  I say lame because there is no cure, just a few medications that will help support them.  If the test comes back negative then we have to make another trip back to Seattle for muscle biopsies.  The kids are also way past due on bone marrow biopsies so we have that coming up soon.  I will wait until school gets out just because they have already missed so much school. 

Ohh....sometimes, this feels really close to crazy and unbelievable.  It just never seems to end but I am holding on to hope that things are going to get better soon.