Special needs frustration

Hi, again. As I posted before, my toddler has some special needs. Those of you who have been down this path know how complex it is just to figure out what is wrong, and then what to do about it. My toddler was nicknamed Jellybean (hence the name of this blog) while in utero, which evolved into Beanie, Beanie Baby, Beanie Boy, and other variations on this theme. So, for the purposes of this blog (and guarding my family's privacy), I will call him Beanie here.

Anyway...so when Beanie was born, he was apparently fine, but at two weeks old he had an episode of difficulty breathing, slow heart-rate and low body temp. He was hospitalized while they tested him for everything they could think of. All the tests came back negative, normal or inconclusive. He got better, and they sent him home with an apnea monitor (a device that sense breathing stoppages and sounds a shrieking alarm). These are reassuring in one sense--since they won't stop breathing without you knowing about it. But they are also prone to numerous false alarms at all hours of the day and night, causing terror at first, and then annoyance once you get used to it. I had kind of a love/hate relationship with the monitor (only without much of the love).

Following this episode, he had no further breathing problems, but did have real trouble gaining enough weight. The guidelines for healthy weight gain in infants is one half ounce to one ounce per day. (Imagine is adults gained a pound every 16 days!) Some weeks Beanie would gain only an ounce in a week. I fed him and fed him, but he was not interested in eating much, and also was very sleepy and would nod off before finishing a meal. I was frantic to get some weight on him (nurses used phrases like "failure to thrive" that made me feel like a horrible mother, and made me afraid for him).

Initially, his pediatrician was not concerned, even though I was very worried, and my lactation consultant was, as well. At his well-baby visits, the doc would brush off my concerns about his weight. Eventually, though, the doc became very worried, and suddenly it was treated as an emergency (with the implication of why hadn't I brought this to his attention sooner?). We were referred to a pediatric neurologist (which surprised me--I would have thought maybe a gastro-enterologist or something), whom we eventually referred to as "Dr. Doom".

Tomorrow--the saga continues--what did Dr. Doom say?