Why we are writing about our journey

I am here to write about my family's journey because I felt this might be helpful for others in our situation.   So for starters, here is some background.  My wife and I were blessed with a loving daughter and decided to have a second child.  Our son was born one month early with significant breathing and muscle problems.  After several months of tests we finally received a diagnosis of myotubular myopathy.  The following posts will contain our journey.  Some posts will be about our family.  Some posts will be about the medical condition and what new families on this journey can expect.  Enjoy.

Here are the early pictures from the NICU.