Saturday, September 27, 2014

Little Guy and Neuro

I know I haven't spoken a whole lot about our Little Guy and am obviously limited.  But, we went to neurology yesterday, Friday.  It was what we expected.  We have a wonderful neuro team at Duke.  We go to the two big hospitals here for certain things.  Or, if we need a more specialized approach.  Hence, why Alyona went to Duke for her neurosurgery and scoliosis surgery.  And, our other docs will even suggest the more specialized care if it is needed.  I appreciate that and them respecting our decision.  Like when I called our regular ENT.  Knew house guest would be fine there but asked about Little Guy. They said he'll need UNC and I agreed. 

Anyhow, we went.  We were running late and I called to let them know.   About 15 minutes late.  Went back and had the appointment.  We had suspected silent seizures for awhile now but actually saw him on Wednesday night seizing.  Hard to see your child like that.  Neuro agreed most likely from description he is having seizures and will need life long epilepsy meds.  However, for now we're all calling them 'spells' till we have confirmation from EEG.  Head doc was there too for some of appointment.  I appreciated that too as he is a more complex case.  So, walked away with OT, PT, speech, neurobehavior referrals.  Also, with referral for sedated MRI and EEG.  Genetics appointment and ortho appointment will be next week as well.  Going to be very busy soon but having answers is key when these children come home.  That way, you know which way is the best path to healing.  Helps. 

After that, picked up kids from a friend's house that was watching them.  This is one of those appointments we needed full focus for and having a bunch of little ones running around would not have allowed for that.  Nice to have awesome friends to help.  We learned that swim diapers are just not a great back up when you run out of regular diapers.  Note that one folks.  We are now washing a carseat and clothes.  At this point, doubt I'm using them in the pool either!  Since kids hung out w/ friends all day and at Civil War class, we had a very lazy night just chilling and having stroganoff and watching a movie. 

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