Overdue Update

I’m so sorry for not updating about Jason sooner.  To be honest it has been difficult to know just how to update when we are still left with not a lot of answers.  I kept pushing it off hoping I would have something better to give you. The biggest thing to celebrate is that all tests have come out looking fine. We are still investigating but are thankful at this point that there haven’t been any further episodes or cause for concern. No news is sometimes good news.  It took a few weeks for the nerves and anxiety that it might occur again to go away. Thankfully we all understand that  just like everything else that occurs in our family it’s all out of our control.  So we press on knowing and trusting in the one who is sovereign over all things.   

We will get another opportunity to practice patience and trust in a few weeks.  Jason, Noah, and I will be visiting the Mayo Clinic in Rochester MN.  When Noah and I were first diagnosed with Desmin Myofibrillar myopathy I researched it like crazy.  Unfortunately there wasn’t a lot I could find.  I did find a doctor  who did some research on it and wrote a few publications.  Her name is Dr. Selcen and she works out of the Mayo Clinic.  She has actual patients with our same disease. This is a big deal because all the doctors we see are not as familiar with our disease.  They can treat the symptoms but not really help with what to expect.   We had talked about going over the years but Noah was on the transplant list and life just happened.  The Lord put it on my heart again as I was chatting with a girlfriend and  he has literally helped make this trip happen down to every last detail. We leave September 22 and Both Noah and I have appointments and procedures all week long.  We would really appreciate your prayers.  We are really hoping to get some answers and gain some understanding on several big areas of our disease.  More on this in another post.  Because there is no cure for our disease these appointments can be difficult.  We know we will hear many things that will be hard to process. We are hopeful also to hear some solutions and possibilities from doctors who have experience seeing patients with our same disease.   Would you please pray for our time.  I’m hoping to blog more about our experience so we will keep you posted. 

Thank you for continuing to be our support.  We are so grateful.