Before we left the NICU, the dietician suggested we do some genetic testing to determine if there were any underlying conditions that caused Finlay to be so small. It took a few months to get this testing back, but we finally had an appointment with the geneticists on Thursday, March 31st. We were told during the appointment that Finlay most likely had Duchenne Muscular Dystrophy. 

On Friday, April 1st, I had labs drawn to determine if I am a carrier of this gene. If I am, Brodie and Waverly will also be tested for the gene. MD of this type does not manifest in girls the same way it does in boys. In boys, there is mostly large muscle wasting whereas in girls, it is more commonly associated with cardiomyopathy. If myself or Waverly have the gene, we will both begin to undergo regular cardiac screenings to check for muscle deterioration in our hearts. 

Also on Friday (4/1), Finlay had additional labs drawn to determine his currently muscle function. This level was expected to be extremely high (>100,000). I got a call from the genetic nurse practitioner and Finlay’s level was 46,630. This *could* mean Finlay has a less severe type of muscular dystrophy (Becker). 

At this time, this lab level doesn’t change anything about our course of treatment, but the nurse practitioner is hopeful this means that his overall prognosis is better. 

I am expecting a call today from the referral coordinator with the Vanderbilt Muscular Dystrophy Clinic for an appointment. 

Thank you everyone for all the thoughts, prayers and well wishes while we navigate this uncertain time. 

I will continue to do my best to update everyone with as much information as we have. And I hope this website is more convenient than getting a group text message. 

Thank you all again & love to everyone of you. ❤️