One of the things that really stinks about PWS early on is that, as parents, we're always in the "waiting for the other shoe to drop" mode. (I wonder where that phrase came from. It's quite odd, isn't it?) All kinds of things are going on with any child that age in terms of growth and development and because, for the most part, they can't tell us all we need to know to help, it's frustrating on both sides.
For the situation at hand, we have tried, as I know you all do, to have everybody eat at the same time. When that's not possible and Erin has asked for food, even the smallest bite–and I mean sometimes TINY–of whatever someone else is having has been enough to satisfy her. That says to me that it's more of a curiosity than a hunger issue. It's more like "I want to be sure I'm not missing anything" than "I'm truly hungry."
One other thing we have done with Erin is a little visual trick. Whatever we give her, we break it into two pieces and say, "Here is one for each hand." The psychological effect of having two things and having something in both hands leads to more satisfaction (but not more food).
One other problem with having an infant w/PWS is that they spoil their parents. They are so easy, aside from the initial health issues, that any time they start spreading their wings and asserting their upcoming quest for independence, it seems like things are coming loose at the seams. Jake is getting stronger, and, in a sense, waking up. He's got energy and preferences and maybe a growth spurt and maybe cutting teeth and who knows what else, but he's on the move and becoming his own boy. Seeing this new child emerge takes some getting used to and letting that passive, quiet baby stage fade takes some courage. 🙂
Those are all things for today. In looking ahead, which all we PWS parents do more frequently and more intensely than anyone else, I'd focus on activities and therapies that calm his central nervous system. I've talked quite a lot about this and won't repeat it all again, but a focus on sensory integration and strengthening his central core are all-important at this age. Let's take a look at the Sensory Center up near you when I get home. How about that?
I'd also be sure that all his meals and snacks have both carbs and protein. It's good to keep that blood sugar in mind early on and support his body in this way, especially considering the havoc that PWS can create on a person's hunger signalling. When you give him an apple, put a little peanut butter on those slices. Slap a little turkey on that cracker, or a little cheese. Introduce things like hummus and add some spice to up the sensory experience. Make sure those taste buds wake up and know that they have been fed.
One more thing you might want to consider is a timer. When you tell Jake that his supper will be ready soon, it's vague and all he hears is "not now." We used a timer like the one on this link (http://www.flaghouse.com/itemdy00.asp?T1=36298) so Erin could SEE how much time was left, or at least that there was time left. We used it for lots of other things, too, but it was very helpful when she was younger in helping her deal with waiting. I hope that helps,,,
You know when I get started on something like this, I can't shut up. I'm going to close myself down before you add me to your "blocked" list, but I just wanted you to know that this is neither the end nor the beginning…just another part, and one you can handle. As always, I'm right down the road if you need me!