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.

Bobby's Home

Bobby came home this morning. We are very relieved that today was the day - he's so tired of being poked and prodded that he was screaming at even minor procedures. Who can blame him? He got the last of his 3 IV liness out today - this one a central line that went into a vein by his heart. Last night they removed the stitches from the arterial line in his wrist that bled forever when they took it out last week. His chest is still swollen from his broken sternum. His cheek is scratched and raw from the tape that's been on his face to hold various feeding tubes and oxygen support. He's had endless thermometers and stethoscopes waved in front of him, stuck on and in him. Enough is enough. Now, he's asleep in his bassinet, tucked under his own blanket in his own house. It's quiet, it's dark, and it's a relief for all of us.

And an even greater relief? The swayhawk, suffering from little care and Bobby's tough times, is bowed but remains unbroken. We'll be washing it and returning the hawk to its full glory later on - after we give Bobby some time to recover from his debacle.

Thanks to all of you who have supported us these last weeks. It's been a tough time but your thoughts and prayers have seen us through.