I've been lurking a lot, but haven't really introduced myself.
My son is now 6 months old, and it looks like we're finally making some progress. He was initially diagnosed with failure to thrive at 4 weeks old, then was found to have dysphagia leading to aspiration and nasal regurgitation at 5 weeks old. Then laryngomalacia and severe GERD were diagnosed at 6 weeks old. Then we were sidelined with pneumonia and a UTI at 9 weeks old, so the diagnosis hunt was paused while we focused on getting him healthy. Then we added dairy allergy and tracheo-broncho malacia to the list of diagnoses. Recently we've added a soy allergy (which has made it possible to control the previously severe GERD without medication!!)
There are a few other noteworthy things that don't fall into a specific diagnosis yet: he has a cup deformity in his ears, which are also slightly low set. His ear canals are so narrow that even the pediatric ENTs can't see inside them. His nose is a bit flat, his eyes a bit wide spaced. His lower jaw is small and receded (but he doesn't have a cleft, so although he looks like a Pierre Robin baby, the geneticist has told me that without the cleft he can't be diagnosed as having PR). We've recently realized that his feet are extremely small, who knows if that's at all related to anything. Oh yeah, and he has a blocked tear duct in one eye that has had repeated infections. Frankly that's been the least of our worries though!
Despite all that, he appears to be developing more-or-less normally. He's small, but he's proportionate height/weight. At 6 months he's rolling over, lifting his chest off the floor, sitting with support, eating his toes, etc. He smiles, he babbles, he responds to his environment.
After many many battles with doctors, I'm proud to say that he's been exclusively breastfed (had to ward off a g-tube many times, and I've been threatened with "having" to put him on formula...ridiculous...we did thicken feeds for a while when he was aspirating so badly) He's non-vaxed as of now, after all we've been through I'm not going to take that chance, although pertussis does scare me with his diffuse airway malacia. We're delaying solids because of the food allergies and dysphagia, we partially co-sleep (he spends half his time in our bed, half in his bed next to mine), we don't circ, and we give lots of hugs and kisses!!!
So that's us!! Our 2 year old is completely normal, aside from some minor allergies (not sure what to yet) and a major case of stubbornness!