Update

On a daily basis we don’t think about it all that much, it’s just part of life.  An awesome life at that.

But spending an entire day at several doctors (which is a really lucky thing to get scheduled!) dials us back a notch.

People ask often about his progress, so here it is:

He sees three different specialists. One for the corneas. One for the retinas. And one general pediatric opthamologist to help with the amblyopia (caused by all the damage done by other two)  and to keep and eye on everything else. We are really lucky to be able to have these specialists in Denver and we don’t have travel further.  oh, and have a local doc that keeps him in the  trendy specs.

He will be on medication for another year and a half for the retinal issues, for which he still has blood tests done every 6 weeks.  His vision, during the first few months of treatments improved, but has now stabilized and went back down a line this past month. Trying not to read anything into it.  The doctors have now told us, that they have never seen or heard of a case with a child with both problems at the same time. He’s often seen by students at appointments, which kind of make me feel like he’s a science experiment for them.  But…..he kind of is, and from what I understand, he’s kind of a once in a lifetime patient.

And that’s the low down! Short and sweet.