January has been a crazy month! We are on a Information seeking mission with Cameron and his sensory issues. He has had an upper GI, blood workup and we are waiting to schedule a scope in the OR- all of this to make sure that his reflux hasn't cause any more serious damage. Then we go to ENT to make sure there is nothing complicating his vestibular system that might make his nystagmus ( his eyes scanning) worse. Then we go to Ohio for testing that we hope he can stay still long enough to get what we need and to meet Dr Hertle- THE foremost authority in nystagmus research. Were hoping he will have some answers as to how this disorder complicates Camerons other systems and find ways to keep it at bay... And hopefully have surgery to improve the condition.
Brody is going to ENT Friday and that same night getting a sleep study- if that goes well he can come off the vent at night and begin to prepare to get his trach removed in the spring ( as long as we can keep him from getting sick before then!) He is kicking it with spoon feedings and finally holding his own bottle.
Happy 1st birthday babies... You are the Roughest toughest there are.
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