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

Tuesday, December 23, 2008


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Simon seems to be enjoying the holidays so far. He has now had his first Solstice, his first First Night of Hanukkah (he LOVED it) and his first early Xmas with my Dad and Stepmom. On Saturday, my Dad and Nola came over for a pre-Christmas/Hanukkah get together. We had lunch and opened presents and Simon was so happy and content and playing for the 2 or so hours. He got some very cute things :-)
Sunday we went to a Latke Party with about 20 people. He was a little fussy and seemed a little overwhelmed but when it was time to light the menorah and sing, Simon stood stock still in my lap, eyes wide as saucers and watched everyone. Then the men started doing the hora right in front of us and he watched with big eyes as I bounced him in my lap to the music. As soon as the festivities were over and things returned to regular party hubbub, he was done.
We stopped by the hospital today to drop off cookies for the staff there and had a really nice reunion. The annex was closed due to low admissions, so we got to visit bed 22. I didn't feel even the slightest twinge of icky feelings there. As Laura said, "that's where he started to heal". Bed 4 in the regular ICU is a whole other story. Ugh.

We had another sweet evening tonight with some family as you can see:

Here's my latest dream life that Laura cooked up for me...I work 4 days a week at my awesome new day job, bake up a storm on Fridays and sell my goodies at the Farmer's Market around the street on Saturdays. I've been baking lately and I forgot how much I missed it. Someday I'll find a way to do more of the meantime I'll enjoy the holidays as an excuse to fatten everyone up :-)

We're off to Gualala tomorrow (up the Mendocino coast) to hang with my Mom and Stepdad in their cabin. We're looking forward to 4-5 days of eating, watching movies, hot tubbing, beach and general chillness. Ahhhhh.....