DS2 had his MRI Friday.  It was a little scary for mommy as he had to be sedated since the scan takes 45 minutes to an hour and requires you to be completely still.  It was a really long hour for me but once it was all over baby was fine.  He continued to nap for about 30 minutes then woke up slowly.  It took a few minutes to get proper sucking down then he was able to nurse.  After nursing for about 20 minutes he was smiling and looking around.  We were at the hospital for about 3.5 hours total.  He napped a little on the way home and slept well that night.  I was very happy with the care and patience at National Children’s Hospital as usual.

Yesterday, Tuesday, we got the MRI results.  No surprising findings.  No tumor and it isn’t Joubert’s Syndrome as suspected.  His brain stem is smaller then it should be (this area controls vision) and another area is smaller then it should be (controls vision, motor skills and speech).  The nerves to the eyes also appear thinner then they should be.  So, his symptoms of optical apraxia and crossed eyes are not surprising nor is his low lone and physical delays.

This does complicate the opthamologists recommendation to do stabismus surgery to straighten his eyes.  Given the damage in the brain, there is a lower chance of the surgery being successful.  The opto-neurologist said it is worth giving it a try and soon but I’m not convinced.  I’ve got to do some more research and sole searching.

All and all, I feel I’m taking this well.  Not sure what to do next.  The opto-neurologist said there is nothing more  we need to do right now but Occupational and Physical Therapy weekly as we are doing and he’ll probably need speech therapy when he is older.  He also referred us to a geneticist to see if we can identify a genetic link.  He says the abnormality does not look like something that I did wrong or brain damage but rather something that occurred early in the development (first trimester).  For now, I like not having a label, as the opto-neurologist said, the brain is plastic and can adapt/change a lot especially at just 8 months old so we just have to keep working on the symptoms and not “type cast” his future potential.

Your Reply