The Zen of Bobby

Bobby continues to do pretty well with his heart condition. Feeding times are becoming more labored as he loses his breath and tires out. So far, the Lasix has not helped so the doctor put him on a higher dose yesterday. Sometime in May, we expect that we'll start the drug Digoxin. Digoxin increases the strength of the contractions in his heart, helping things work a little more efficiently.

All of these medications are geared towards one real goal - keeping Bobby strong enough to gain weight over the next couple of months. He continues to get bigger, although not as quickly as he did in the early days. We continue to experiment with feeding positions, burping positions, timing of feedings, etc. trying to give him the best possible dining experience.

We also had our first meeting with Early intervention yesterday. In a couple of weeks, we'll get a visit from physical, speech, development, and occupational therapists. They'll help us identify where Bobby needs some extra help and where outside therapy might help.

So far, the idea of Down Syndrome is still mostly an idea. We have no idea how he's impacted now or where we're headed. He seems pretty magical to us.

When we first found out last year that he was likely to have Ds, we were devestated. I spent days crying, wondering what the future held for him and us. Would he ever fall in love? Would he always live with us? Would he ever hold a job?

These days, worries about his heart condition block out any concerns about what happens beyond this summer.

Worries about bulking him up for his surgery and the constant struggles to find a good feeding groove leave us with little time or energy to obsess about the surgery.

The battle with his incessant gas and constipation that slows his food intake fill the spaces between feeding schedules. Last night I spent eight hours comforting him as he shifted and strained. Minute by minute, I held him, desperate for him to go to sleep, sniffing the air anxiously for signs that he'd gone to the bathroom. When, at 2:00 am, I opened his diaper to find a pile of poo, I was nearly beside myself with happiness.

In three weeks, he's taken me from extreme anxiety about 20 years into the future to a early morning moment of pure joy over the tiny victory he and I shared. What a cool kid.