Today Nicole stayed at the hospital while I went to work and met with a ton of doctors and specialists. It was a lot of people...His doctors (all three, attending, fellow and resident) neurologist, geneticist, cranial facial specialist, plastics team, social worker, case manager and occupational therapist. They all told us multiple things. Here is the skinny...
MRI scheduled to see his brain and what might be going on. CPK test scheduled to see about muscle disease. Sleep study to be scheduled after MRI. Work with therapist on feeding over the next few days. After sleep study, discuss any surgery or fix for breathing issues related to PRS (Pierre Robin Sequence). Do broad genetic testing to see if anything else can be found.
They tried to take him down for the MRI Monday evening, but the thing that they did, was unsuccessful and they had to bring him back quickly and reschedule for the next day.
They then took blood and that went fine. Then off to sleep we all went.
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