Sweetness

Here's a pic that will you make smile!



Janie is doing well. After a couple weeks of being less active since the tube was put in, she's back to rolling all over to the point where we've got to get things out of her way and be mindful of the step into our sunroom (no more leaving her on our bed unattended either!). She's also back to eating her toes more frequently since her abdomen is less painful.



Her eating through a bottle continues to improve to the point where we rarely use her feeding tube during the day. We're not able to quite get the recommended amount into her during the day so we typically hook her up to the pump at night to get the last feeding into her during the first couple hours of her night. One of us gets up at night to turn off the pump and then she's typically hungry when she awakes in the morning.

It's easy to wonder if it was worth it to install the tube given how little we use it. However, the peace of mind it provides is invaluable and it allows us all to relax about feeding Janie as we know we can "top her off" each night with whatever we weren't able to orally feed her during the day. Plus, we'd be scrambling each day to feed her what is necessary to allow her to grow. I certainly believe that Janie senses the peace we have and it translates into better eating.

Given how much she's taking in through the bottle, her interest in solid food has slowed a bit, but she's still taking some. We're also giving her things that allow her to "munch" so that her mouth gets exercise. She likes those things so its fun to see her chewing.

Janie has started wearing a patch on her dominant eye a couple hours per day while we wait for the eye doctor to get her glasses. Even after she starts wearing the glasses, she'll still wear the patch each day.

Finally, at 8 months, we're doing our best to encourage her to sit. We've seen some improvement in her torso's strength but it seems she's got a ways to go before she'll be sitting. Janie doesn't care as she's satisfied rolling around and soaking up the activity around her with her curious eyes.

It's really nice to no longer have a tube in her nose. We all have a new-found freedom.