I haven’t done a healthy summary lately because it seems whenever we get answers, we always end up with more questions. Ava sees Infectious Disease on Thursday for her cyclic fevers/connective tissue disorder. She also battles her usual things like a metabolic disorder, chronic Neutropenia, anemia, hypoglycemia, OSA, GERD, central apnea, breath holding spells, cyanosis, seizures (lessening!), FTT, temors, CP, laryngomalacia, tracheomalacia, hypotonia, wierd rashes, developmental delay, macrocephaly, etc… The newest is subglottic stenosis from her multiple intubations, which is being watched. She’s been intubated 11 times that I can remember off the top of my head. She has at least two more surgeries in the future (foot and airway). We now need to watch the SGS and weigh pros/cons for upcoming procedures.
I’ve heard so many possibilities…. I’d love for some answers. I’d love it! But would a diagnosis change anything that I’m doing? No, it wouldn’t. She’d still be my sweet, beautiful, perfect in every way, little girl. She’d still be the goofy baby that loves to laugh at her big brother. The same toddler who loves to borrow (ahem..take) her sister’s Nintendo DS.
I’m really struggling to find a happy medium. I want to know what’s wrong with my child. I want to know there is nothing else wrong with her that we don’t know about. I don’t want any more little diagnosises. Will it change anything to know? No. But I do feel like I’m waiting for the other shoe to drop always.
What I want to know is if the above things are the actual diagnoses or are they the symptoms of something much bigger (and meaner)?
