An Undiagnosed Life

 After the more common genetic testing was done, we had to go a step further and do a more in depth testing. It's called Exome Sequencing and it looks at tens of thousands of markers in our DNA. It's a simple blood test, but it takes 4-6 months to get results. Both Jeremy and I had to give blood as well to check if we may have passed on something individually or if we both had a dominant trait that went to Henry and made him this way.  Talk about a long time to wait for results that may or may not change the course of treatment action. So while we waited, we continued therapies and just getting through the days. It helped alleviate a little of my stress because I felt like we'd done everything we could up to this point and now we just have to wait for the results. Of course something had to come back, right?! Why else is he the way he is? WRONG. Around Henry's first birthday we got the results back and they were Inconclusive. No joke. The genetic admin called us and was...

Because Henry presented with some neurological issues in the NICU, we were referred to a neurologist to get an MRI to rule out anything specific. At this point, we've had no answers, so we were hopeful that maybe we'd have a diagnosis. I think the theme of Henry's life is we never get actual answers. It's always a mystery!!   When the doctor reached out to us to go over the results, he still had no solid answers for us. The only thing that presented in the MRI was a thinning corpus callosum. Basically the part of the brain that connects the two hemispheres. The thing is, the corpus callosum hasn't been studied enough to know why or how this may affect the brain. In fact, there are people born without it completely and live absolutely normal lives never knowing it's not even there. Then others, like Henry, have neurological issues/disorders/problems. So whether this is the cause of Henry, no one can actually say. Shocking, I know! The neurologist basically wrote ...