After a long and exhausting and draining (and sick, for me) day, we found out that Trey’s EKG and echocardiogram from today are indistinguishable (doctors words) from March 2009’s tests. Well, nothing like GREAT news to put things in perspective. Not that life wasn’t in perspective before… a friend’s son was just excluded from the MPS II IT trials (in the trial, doctors inject the enzyme our kids are missing directly into the central nervous system/brain because the enzyme replacement therapy our kids are on right now doesn’t break the blood brain barrier, so can’t help the brain’s progression of disease). This little guy has a known severe mutation, so they know his brain is affected, and this trial is/was the only hope to save his brain. Now the parents are just expected to sit by and watch him deteriorate. To put it tactfully. It makes me sick to think about.
So, life was already in perspective. But, when you’re sick and have just sat for 5 hours for an infusion with 3 kids, and then sat two more hours for cardiology tests, and then you wait in a room with only a few books, for 50 minutes, waiting for the doctor to come give you your results, I got a bit… frustrated. However, this awesome news makes none of that matter. My kid has a progressive disease, that affects his heart, and the past 15 monthes has shown no progression of this organ. He has only trace mitral and aortic valve regurgitation. Fucking eh (not so tactful, but sometimes emotions, and resulting words, can’t be tamed :)).
