Friday, December 26, 2008

Life on the Coast

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We are having such a sweet time in Gualala. Simon is loving it up here and our easy schedule of beach walks, food, movies and lots of laying around. And it's really scary to be far from the hospital. Simon has been a little more symptomatic the past couple of days and I'm terrified and furious. He's been panting a little and today started to break a little sweat. I paged Cardiology and the doc on call basically said it's normal for him to pant while he's active because his body is trying to compensate for his dimished cardiac output. If he's panting all the time, then that's a different story i.e. not so good. For right now it seems to be just with activity. We're planning to stay until Monday but I'm really steeling myself to pack up in a hurry and get the hell out of Dodge.

We've DVR'd all the Harry Potter movies and have been watching them lately, in chunks. I had a funny thought this morning that Simon is like Harry Potter. He survived an attempt on his life in early August and now the evil spirits keep trying to get him but he keeps battling them off. It feels like Dementors are always swirling around like the the Turkey Vultures we see up here on the coast, though. I hate it. I hate the spector of death always at his neck.

One of my mom's friends, a Yoruba Priestess, essentially said the information she's getting about him is that he's going to make it for now but that every 7 years he's going to have to decide whether or not to stay here. I so wish I could just wholeheartedly believe her and chill for 7 years. I could put up with so much hell cheerfully if I knew he wasn't going to die from his symptoms for at least 7 years. I could battle for his life again if I knew to steel myself but what feels like the daily assault is sometimes so exhausting.

(3 days later)

It looks like Simon is having a little growth spurt! He's been very active, very cute, liking tummy time and in fact fell asleep on his belly the other day. Laura heard a "gallop" in his heartbeat a few days ago and we both freaked out a little. She called Cardiology and they said that actually it might be a sign that his heart muscle is thickening, which we want, and not to be worried to much and just keep a close eye on him. We would really, really love that...
Shimmy in his fancy Xmas outfit

Look what we got for Xmas!

Sweet shot of the kids

Shimmy's first Christmas tree


Anonymous said...

What a *fantastic* vest! Glad your holidays were so happy.

Sara said...

What a beautiful little boy! He looks like such a happy child.