The Neurologist Appointment

Today was Brayden's follow up appointment to the neurologist. It was scary, stressful and much anticipated! Basically, last time we were there she noticed there may be an issue with one or more of the cranial nerves causing all of the problems we encountered. It has been a while since we have been there so through our own observation we knew he did not have mobius syndrome (because he smiles a lot now) and the eye doctors did not think he had Duane's Syndrome because they observed his eyes moving out. So, she got to see all of these things today and pretty much agreed and ruled out a cranial nerve dissinervation syndrome. It's great, but kind of puts us right back at square one. He now has to have more tests done including a spinal tap and a muscle biopsy, which he will have to be sedated for again because they are extremely painful and invasive tests. They are now looking for any other metabolic disorders causing his delay. She doesn't think this is the problem, but we have to rule it out. She just knows that he is not "normal" and we have to figure out why....hopefully.

The appointment had some positive aspects but hearing that your baby is not normal and something is wrong with his brain brought all these crazy emotions up. Maybe just because it was such a stressful day, I felt overwhelmed, sad and almost defeated. It's strange, but most of the time I try my hardest to feel the most positive I can and bury my feelings about how sad all this makes me feel and then a day like today makes them bubble all over the place. Hopefully you were not one of the people that called to see how the appointment went because the more and more I talked about it, the more of a sobbing mess I turned into by the end of the day.

I decided to write this blog to keep people updated but also as a way to get my feelings out, like a type of therapy for myself so unfortunately today the message is a little more on the depressing side. It's impossible to ALWAYS feel optimistic. The "what ifs" find a way in and the "Did I do something wrong during my pregnancy to cause this" occasionaly creep in. I can't explain in any kind of words what it feels like for something to be wrong with your baby. You don't have a clue how it feels unless you've been through it. I feel helpless, scared, overwhelmed, guilty and heart broken. I can't tell you what it feels like to answer people that my child is 15 months old and how it feels to look at their reaction or wonder what they are thinking. As parents, we never ever want people to look at our baby like there is something wrong with them. It literally hurts my heart to answer a simple question like that on a daily basis. I can't tell you the guilt I feel when I am washing dishes instead of excercising my baby because I feel like I ALWAYS have to be doing something with him even though it is humanly impossible. I can't tell you how horrible it feels to hang out with other babies his age and see what he should be doing and wonder if people are thinking the same thing. Just going to a regular pediatrician's appointment is torture when I have to answer questions about milestones. Is he doing this? no. Is he doing that? no. It's horrible.

Please don't ever take your baby's milestones for granted- it is the most wonderful thing! Don't take it for granted how your baby's reach those milestones with ease. Don't take for granted your family's health....it's the most important thing in the world. I am sorry for such a depressing post but sometimes I HAVE to get it out!