Routine and repetition

I've delayed posting for awhile, because I've misplaced my camera cord so I can't download photos for the time being. James has some adorable rolls of fat on his legs now, and is really looking his age. He's still below the growth curve (meaning the average weight of the smallest 3% of kids his age is still higher than where he is now) but he's catching up.

However, he's not catching up in other areas. Feeding is still a major issue, and we've met with a series of Early Intervention evaluators in hopes of getting him feeding therapy. He has developed behaviors that they label as "oral aversion". We've known this for awhile, but the label is nice to hear because it means that finally someone is taking this seriously. Solid foods are not enticing him... he's curious enough to swallow a few bites of food with a yogurt-like consistency, but not interested enough to go beyond the initial taste test. Anything more solid gets promptly spit back onto his bib.

I won't even get into how annoyed I am with Early Intervention, except to say that the program is disappointing with its limitations. Feeding is a recognized developmental delay, but NYC doesn't consider it important enough to address on its own. They won't let a child who can't eat on his own get feeding therapy unless he also has another developmental delay. Furthermore, their own evaluators decide whether a child qualifies - even though a pediatrician must recommend the child for specific services in the first place. Thus, EI depends on the arbitrary decision of a non-professional evaluator who is not familiar with the child's medical history, and ultimately ignores the child's doctor's input. This is how our government dollars are allocated...spent paying evaluator after evaluator after evaluator to reexamine an already diagnosed child before any of those dollars go towards actually doing something for that child.

Fortunately for us, James has been judged as a qualifying candidate. Ultimately, though, no one will do much to teach him the skills he missed and un-teach the negative behaviors he acquired through these past months of medical marathons. So above all, we're lucky that I can stay home and work with him throughout the day. It's frustrating to deal with, since I feel like I really do dedicate hours a day to feeding him. Not only does he take a long time to eat, but the series of exercises we go through to keep him developing his skills and tastes adds on to each meal. We spoon feed him one or two solids first, to expose him to flavors and hopefully help him slowly develop his oral and social skills. Then we bottle feed. We migrate from chair to arms to crib as we try to coax him into relaxing and eating... we trick him into taking his meds... we do facial massages to stimulate his swallowing... we try music and videos and bouncing to relax him if he's too wound up to focus... Finally, once the options have been exhausted, we connect him to the pump and finish his meal via ng tube. To wrap up: dishes to wash include 1 bottle, 2 spoons, 2 bowls, 1 ng bag, 2 syringes; and the table and floor are covered with food. Clean, sit back, do some physical exercises with James, and then get ready because he's getting hungry again.

I get pretty worn down by the monotony of my days, because although I love him, much of our time is spent with the above routines. He makes up for it though when he cuddles close... :)