The Call

Journal Entry, April 8, 2004

What to say, where to start. Luke loved China. I loved New Orleans. We love being back. I love him and he loves me...we both love Niko. Niko loves us. So maybe everything else is secondary.

I received "The Call" about 20 minutes ago. "The Call" clarifies the elusive SOMETHING that has been dogging our steps the last eleven months. Well, first...last week Niko's sedated echo showed some blockages in the veins going to the lungs. So to compensate, his heart has to pump harder, and since it's a muscle and is working harder, it's thickening a little within the chamber. Since the chamber is smaller, there's not as much room for the blood to go, so it's having to pump harder-- vicious cycle, and all that. The Cardiologist says she thinks there is another obstruction in the aorta, but she couldn't tell from the last echo. In three weeks we do another one, and get a 24 hour heart monitor for him. And do a CAT scan, so they can see better. And probably a million other things that I don't know about yet. Honestly, though, I'm so glad that they are so eager and willing to help. I have confidence in them.

Anyway, "The Call" states that the preliminary report finds that he DOES have Williams Syndrome, although it will take a week or so for the final results to come in. That's consistent with some, though not all, of his heart symptoms and his developmental delay. Although I thought he was okay, he's 11 months and has the development of a six month old. We go to physical therapy with him once a week and I work with him at home every single day. We have a conference tomorrow with the geneticist to discuss it. I guess I'm not surprised. When they first mentioned Williams as an option months ago, something rang true to me. I mentioned that to Luke then, and we brought that up today. Overwhelmed, I guess, but not surprised.