It seems like so long ago, but in reality it has only been a couple of months since I was posting about how Devona and I had begun to use doctors’ desires as leverage to get what we wanted; every doctor along the way seemed to have their theory about what Ren’s condition is, and all were trying to get to the front of the line to have his blood drawn to have their theory tested first. Two months ago I blogged about a strategic move we made with the doctors when it came to testing. We agreed to sign a consent form, in order to let doctors test Ren for what was next on their list of possibilies/probabilities, only if they agreed to test for something that was incredibly rare because we believed it to be Ren’s condition. (If you haven’t read the post that details this, you can read it here.) This morning we had an appointment with the geneticist to go over the results of the test and they corfirmed that we were in fact right. Ren has RYR1 Myopathy. As far as bad news goes, this is great bad news. As I stated in my earlier post, it is not uncommon for kids to present as severe as Ren and eventually lead relatively normal lives. It will require a tremendous amount of work and therapy, but we are committed to giving Ren all the support and professional intervention it takes. Having an actual diagnosis is a huge relief and will allow us to not only move forward as a family, but to tailor his therapy in a way that will benefit him most.

The past three months have been both rewarding and difficult, but not knowing or having any answers was the part that felt hopless and unsustainable. Now that we have some answers, we are invigorated as a family and will be making moves to get our little warrior everything he needs to thrive. We have many mountains to climb, but now that we have a map, there is nothing that can stop us. We will continue to work to get our nursing staff and therapists to a point that allows us to be Ren’s parents rather than his primary caregivers for the majority of his day. Now that we have some direction and life is beginning to become more managable, I will be updating Ren’s blog with his progress and story of strength and hope. Thnak you to all those who have followed our journey and continue to share love and offer support. It is our friends and family that have allowed us to keep our heads and spirits high, and our pursuit of a diagnosis focused during these trying times. Love to all from the Gordons.