Last November we met with the Neurologist for the first time. An MRI and several other tests (genetic microarray, SMA, some metabolictests, etc.) were scheduled for mid-January. The appointment was cancelled because Sadie got RSV and was hospitalized for 6 days. The appointment was then re-scheduled for late March and was cancelled the day before by the anesthesiology department because Sadie had gotten a cold some 2 weeks prior and could not shake a persistant cough. Last week we went back up to the same hospital (Dartmouth Hitchcock)to see the developmental pediatrician(s). After a two hour appointment (updating the team, physical asscessment and consult) we were told that Sadie has the characteristics of a child with Cerebral Palsey. I had anticipated hearing this possibility because her peditrician had alluded to the same about 3 months earlier. It was made clear that we still needed to get the testing completed and that this was JUST a clinical diagnosis. We were given two pieces of very good news. First, Sadie does not appear to be at all affected cognitively. Second, the ball is now rolling to get Sadie access to equipment that will help her significantly (i.e. AFO's, stander,therapy chair/table, carseat, stroller, support vest, etc.) that we had been holding off on for want of a dx. Patrick called this week to reschedule the MRI and testing for a third time. The first answer was mid-May. He requested a conference call with MRI, anesthesia and neurology booking and somehow sweet-talked them into getting an appointment that sounded more promising.We are going tomorrow.
Spring has finally arrived!