A New Life All Around

We are all adjusting to life after Bobby's surgery. Valerie and I agree that this new world we're in feels very different - his heart is no longer our primary concern, we have moved on to thinking about daycare and therapy and getting rid of the feeding tube.

Bobby doesn't feel well today. We think we may have aggravated his sternum that still needs to finish healing. He's been so active that we probably rushed his recovery a bit. I stayed home from work today and Valerie and I have been exchanging worried phone calls all day. I'm very comfortable now with dealing with symptoms of heart failure - not at all comfortable when he's achy or has a stuffy nose.

We're looking for new daycare, starting the end of next month. It's very difficult - folks are scared away by Bobby's feeding tube, even though, as we tell them, its much less work than bottle feeding. That said we have one option that's logistically challenging but feels like a great fit for Bobby. So we'll continue to look, knowing that we have a safety net. Its very hard to have so many people turning down our wonderful son. The good news - no one seems fazed by his Down Syndrome, just that tube.

We're starting physical, occupational, and speech therapy. In speech, our goal is to get rid that darn tube. Bobby's progressing - what was a horrible oral aversion has become manageable. He's learned to suck on his thumb. His poor muscle tone won't let him keep his hand to his mouth for long, so he's learned to use both arms - one as a brace and the other as the object of his thumb sucking desire. I love to see the resourcefulness in him.

In Physical and Occupational therapy we're working on his neck extension. Again because of muscle tone issues, Bobby can't turn his head from side to side. Instead, to see around a room, he extends his head back and views the world that way. Another resourceful ending, but one we can't encourage. So, we have exercises to work on his neck muscles. The new direction feels very appropriate - Bobby's learning to face the world with his chin down and his eyes straight ahead while Valerie and I are changing our focus as well, attending to Bobby's future in a world beyond heart defects. It's awkward and exciting for us all.