Today is not that day

Every six months we get up early, head to the city, and spend a good portion of the day at the children’s hospital. The boys know pretty much what to expect, because we’ve been doing this every six months since Samuel was a baby: various tests, meeting with specialists, answering lots of questions, and showing off their physical skills.

These appointments are intended to track progression, offer support and advice, revisit medication dosing, consider clinical trial options, and for the professionals to get a really good look at the boys’ current status. We received excellent reports for both boys today: Samuel’s bone density is great; Josiah’s calcium and glucose and Vitamin D levels are where they should be; Although Samuel’s heart is a bit dilated (on a medication to help with that the last few months), it’s function is strong. Both of them are STABLE. In Duchenne terms, stable is what you hope to hear the specialists say. Stable equals excellent. Stable requires celebration.

Due to the nature of Duchenne, there will be a time when we will anticipate these appointments with dread. We will be anxious about test results indicating decreased heart and lung function. We will see the decline happening over time at home, and the doctors will confirm that difficult news.

Today is not that day 🙂