Saturday, April 10, 2010


The title of my post seems to describe me these days....frustrated!  Ethan had his checkup on Thursday and has not gained any weight since November and has only grown 1/2 inch.  On Friday we went to the Pulmonolgist to review his sleep test.  The results were "not normal but safe".  We will retest in 3 months.  The doctor is also concerned about his reflux and the fact that he has not grown.  Before running a bunch of GI tests which are painful and expensive to determine if a Nissan is needed he prescribed a medicine for Ethan.  One which I learned that my insurance company will not cover unless we have all the testing done first.  Another $305 a month script....frustrated! Oh, and my insurance company won't pay for a fresh muscle biopsy....frustrating!  The test itself is over $10,000 plus the cost of our expenses to go to Atlanta so since our savings is almost depleted (which was our new house fund) we have decided to borrow against our 401(k).  I'm frustrated that I can't fix this for my son, I'm frustrated that my insurance company won't cover more, I'm frustrated that we make too much money (HA!) to get any aid for Ethan and I'm frustrated that I don't have money falling from trees to help find a cure for this awful horrible disease that will eventually take my son from me.  OK - all done being frustrated because really at the end of the day all that matters is doing everything I can to help this little boy.....