Today wee had our first genetic clinic appointment, and received both good and bad news. Bad news is that there’s a possibility he has NF1 or one other gene mutation. Good news is that we were able to rule out a bunch of other stuff. He doesn’t have another symptom so we are unable to diagnose at this time. I did agree to the genetic testing so now we’re just waiting on the insurance to agree (can take up to a month) and then from there wait up to 6 six weeks with the answer. If it does come back as a no, there is still the possibility of him have the gene mutation because the test is only 95-97% accurate. We also were referred to a pediatric ophthalmologist to see if they see anything that could indicate NF1. We’re supposed to be on the lookout for seizures too. Between the ages of 2-3 he’ll need an MRI.

I did ask and because they don’t think that we carry the gene mutation, there’s less than 1% chance any future babes would have the gene mutation even if he does. I’m still reconsidering having any other babies now though..