Turn that frown upside down

Today was a terrible, horrible, no good, very bad day.  It started off ok taking the kids to school, but went downhill from there.  In the morning, I had a check-up with my regular doctor, and as she’s known me since before Avery was born, I told her about Avery’s recent diagnosis. I quickly realized what I had been warned about was true.  That even in the medical community, many know very little about FH and even less about HoFH.  She suggested a vegan diet may help.  I told her we had met with a nutritionist assigned to Avery at Johns Hopkins for about an hour after we met with the doctor there and were following her advice as a family.  I asked if she knew of any doctors at any of the more well-respected hospitals in the area specializing in pediatric cardiology and/or pediatric lipidology fields as we weren’t sure the doctor we saw at Johns Hopkins was the best doctor to treat Avery.  She suggested that there were probably a handful of doctors specializing in these fields across the US, which we already knew was the case.  With a diagnosis like HoFH, it was very important to us to find a doctor who not only knew what HoFH was, but to have the specialized knowledge to effectively treat it.

Ok, so that was a frustrating and discouraging conversation. I left the doctor’s office and sobbed all the way back to town and then went home and cried some more. At dismissal time, I drove to the preschool and proceeded to sob and sob in the car while waiting to pick up Owen.  The other parents must think I’m nuts.  I waited until most of the parents were walking back to their cars with their child before walking up to get Owen.  That’s when I made the mistake of trying to ask his teacher a question and began sobbing again.  This time big, ugly, loud sobs. The poor middle schoolers down the hall must have wondered what a sea otter was doing outside their classroom.

I spent the rest of the day crying off and on and then crashed by early evening, totally exhausted from my emotional rollercoaster of a day. Tomorrow’s a new day, right?