Welcome to week 3

It's the beginning of week 3, and I'm feeling optimistic.

Richard O. is now eating 3.5 ounces of food per feeding, opening really well, tolerating the spoon on his tongue, and starting to drink milk from a cup (though he's not too skilled at this yet). He gained 1 ounce of weight over the weekend -- less than we had hoped, but pretty good considering that we were having a REALLY hard time controlling his blood sugars. He certainly was an active boy over the weekend -- running, climbing, and exploring everything in sight. Even though his blood sugars were high, there were no ketones, no signs of illness, and he appeared to be feeling just fine.

In some ways, I feel like I have had to learn how to treat his diabetes all over again now that he's eating more like a regular toddler. For the first time ever, I am giving mealtime bolus doses of insulin in amounts greater than half a unit! Carb counting this pureed food has been a little trickier, but I have started making most of his purees at home, which allows me much greater quality control and eliminates a lot of the carb-counting guesswork.

We continue to be pleased with the staff here at St. Joseph's overall, though I have to say that communication between the staff and the parents is sometimes poor. Case in point: our struggle with Richard O. and the playroom.

They have a playroom that most of the children in the day treatment program go to in between feeding and therapy sessions. Typically, the children in the program don't see much of their parents during the week -- they get dropped off in the playroom in the morning, and while a parent may observe feedings, they usually only participate in a few feedings per week. I, on the other hand, have been in the room in all but 2 feeding sessions, and those I observed. The idea behind this is so that the child will bond more quickly with the feeder, and any negative patterns that the child-parent duo have gotten into will be minimized to the point of extinction.

However, with Richard O's diabetes and his need to nurse, the idea of minimal parent-child contact during the day just wasn't much of a realistic expectation, so we were told that I would be in on most of the feedings, and that we would try to get Richard O. "acclimated" to the playroom gradually. This sounded good, but it soon became apparent that the playroom staff are neither trained nor willing to be responsible for his diabetic care, so no matter what, one of us would have to be entering the playroom frequently to check his blood sugars. I'm actually more comfortable doing this anyway, but they seem to be annoyed at this exception to the rules.

Furthermore, I have gotten all kinds of mixed messages about nursing during the day here, so I never quite seem to know if they want me to nurse him or not.

And then there's the whole idea of wanting him to be "independent" in the playroom -- as in, he's not supposed to need me to be there. Well, unfortunately, he has absolutely melted down when I've left the room for anything more than 15 minutes -- sobbing inconsolably for periods of up to half an hour. One of the doctors seems to think he's being deliberately manipulative on this point, and frankly, I'm annoyed that she isn't seeing the bigger picture -- that this kid has had FOUR hospitalizations in the last six months, and is scared of strangers, especially people wearing scrubs (like the playroom & feeding staff), and is also at an age where separation anxiety is peaking ANYWAY. And, by the way, he has a chronic health condition that needs constant vigilance, so it's not like I can just melt out of the picture, especially when no one else is going to pick up the ball!

Oy. Sorry to vent, but it's frustrating, especially since the doctors are not always great communicators at explaining the WHY part of some of the things they want.

Oops! Almost time for our last feeding of the day. Gotta run -- we're hopeful that this will be another good one to round off our day. I'll try to update a little more frequently this week!