Neurology

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 us off and pushed us to genetics, thinking if they didn't find anything specific on the MRI, it had to be something genetic. 

My parents neighbor is an amazing pediatric neurologist, so we scheduled a second opinion consult with her and her colleague. They found similar unknowns and did and EEG to rule out seizures. It was good to hear that no one had missed something and the path of therapies and genetics was the right way to go. 

So off we went! The first genetic doc we met with did a high level of genetic testing. Looking for major common syndromes. Obviously they came back normal. They didn't find any abnormalities that would give cause to his issues. And then that doc went off the grid and left us ghosted. No follow-up, no next steps nothing... so we pushed for a new doctor who specialized in neurology and genetics! A win, right?! 

UGH y'all! I never thought I'd have to be that mom to advocate so hard to get your child help! You would think doctors who love new findings and research would be all over Henry! Trying to help him, figure out what is going on, but no. It's black and white for them. It's either a diagnosis that checks all the boxes or its "We don't know, good luck!" Seriously, that is how we have felt with every doctor so far, except for his pediatrician and his eye doctor. They have been the two doctors to at least try and help. Refer us places, continuing to help heal. I'm not going to put down Vanderbilt Children's, as it's one of the top hospitals, but it is very disappointing that we've seen half the specialists employed there and not a single one has invested their time to actual try and help our son. 

His ophthalmologist has been the most supportive, but he has a doctors mind so he's focused solely on that. He's removed his cataracts and lenses and follows up often. He's hopeful, but also cautious and really works hard to keep his eyes healthy in hopes that his brain will catch up and help his eyes work. 

From the time Henry was born till about November, it was cruise control. Survival. Constant doctor appointments, surgeries, questions and zero answers. 

The more time goes on, the more I do believe Henry's issues stem from neurological issues. It just makes the most sense. Everything else has been tested. And now it's just a matter of finding the right doctor who is willing to help our son. And I think we have! Someone who is studying him and giving us options to help him. She's amazing and supportive and I'll tell you all about her soon.