Neuromuscular Update

We met with Ainsley's Neuromuscular doctor Tuesday morning. Our prayer was that she would take time to fully evaluate Ainsley. 

We were so thankful she took the time to connect with Ainsley, watch her run and fully evaluate her. At the end of the appointment she was quietly watching Ainsley and after several minutes of silence she shared her thoughts on next steps.

She decided to do the genetic testing for FSHD-it is a specific form of muscular dystrophy. Thankfully she is leading the way in research in this area and our hospital is one of a handful of hospitals in North America that do the testing-the benefit of that is we should know the results in a couple of weeks.

She also recommended we get an MRI of her spine as toe walking to the degree Ainsley is toe walking can be a sign of binding of the spinal cord. We are waiting to hear back on the exact date since it will have to be coordinated with the PEDS sedation team.

A quick trip to the lab and we were on our way.

We are going to pray and hope for good results which we hope to have by thanksgiving. In the meantime we'll keep enjoying life with our sweet girl!  On a side note A recently discovered Doritos and she loves them. That was her treat after blood work!