A Diagnosis for Robin

I first started to suspect something was amiss when Robin was 6 months old.  At his 9 month check up I decided to not worry until he reached a year.  We learned that Robin was officially developmentally delayed at just over a year, but we did not know why.  Over the past year we have met with immunologists, endocrinologists, and neurodevelopmentalists at Children's Hospital.  He has received occupational and speech therapy from the folks at Wonderland. We've danced at Nurturing Pathways, a brain development movement class.  Robin has worked hard and made many gains, but no one could quite put a finger on what was going on with our little bird.

 On Friday Robin underwent an MRI.  The possibility of doing the test was tossed around for 6 months before it was finally ordered.  I was nervous going into the test.  Luckily, one of our PEPs friends used to be a pediatric anesthesiologist at Children's.  She reassured me and walked me through what would happen.  It was so helpful because Robin needed me to be strong.  That doesn't mean I managed to not shed a few tears when I had to walk away from Robin after he was sedated.  Somehow the doctor's cheerful British accent made everything seem just a little bit better.

Before they put him under,  the anesthesiologist gave Robin his mask to inspect.  We chose a lovely strawberry scent.

 Robin was very brave.  He came out of anesthesia much more nicely than when he had tubes.

The results came in pretty quickly.  Robin's neurodevelopmentalist called us that night.  She didn't want us to go into the weekend without knowing.  Robin's MRI showed he has a brain injury.  She didn't tell me much on the phone.  I'm glad she called because it gave me to time process and formulate questions to ask.

This morning Dave took the morning off from work so he could accompany Robin and I to the MRI followup appointment.  The doctor showed us the imaging from the MRI.  You could see a small subtle area of lightness indicating injury.  Interestingly, the injury is on the left side.  Robin tends to be weaker on his left side, which would suggest something wrong with the right side of the brain.  The injury shows that at some point Robin's brain was deprived of oxygen.  We may never know when it happened, maybe when I had the subchorionic hemorrhage, maybe when he started having trouble during delivery.

The doctor told us that this brain injury gives us a diagnosis--cerebral palsy.

My eyes filled with tears, but I managed to keep it together. I'm so glad Dave was there with me.  Robin has a mild form of cerebral palsy.  On a level of 1-5 classification, he is a one.  Normally, you see hypertonia (the tight muscles that make it hard to move and cause people to hold themselves differently).  Robin has hypotonia, low tone.

Getting a diagnosis is a relief.  There is an explanation for his differences, his struggles.  There is a label for the health insurance companies.  There is a way for educators to understand his needs in a school setting.  I can see more clearly how to set him up for success and navigate life's obstacles.  People can understand the term cerebral palsy versus me trying to explain his challenges and delays.  Robin can pretty much cross playing football off the list of things to do.  One brain injury is enough in a lifetime.

I'm still wrapping my head around everything. He is still the same sweet little boy.  The rational me knows it's not my fault that his precious brain was injured.  But I'm a mama.  It was my job to bring him into this world safely.  The only thing I can do is love him and do what I can to make sure he doesn't let this diagnosis hold him back from achieving great things. 

This Robin bird has wings and he will soar!