Friday, October 31, 2008

Happy Halloween!

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Simon had 2 costumes today- 1 was "Wireless Boy" because he is off his Milrinone(!!!) and the other was "Heart Boy". His Muti Skeeter made him an awesome heart costume:

CHO was a very fun place to be today as they go all out with Halloween. Here is Simon's bed, decorated by Carol with decorations provided by our neighhor Jasmine's mom.

We're very excited, a bit nervous and a bit sad about the idea of leaving the hospital. It's really become home for me (Jaime) and I will miss the social time and all our new friends. But I'm really excited to have time in our house, cook and be able to integrate Shimmy back into the outside world.

Off to bed...

Thursday, October 30, 2008

Tomorrow and Tomorrow and Tomorrow

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Yesterday we went down to .1 and tomorrow, well, tomorrow we just turn the dang Milrinone pump off. Huuuuuge. It's also All Hallows Eve and the veil between the worlds is thin. Shimmy and I talked about how it's going to be a big day and all we have to do is breathe through it, welcome some ancestors or spirits that want to come and visit, and let them know that we're doing just fine, thank them for their support and we'll be staying right here in this world. His Mootie Skeeter made him the most wonderful leather heart outfit so we're going to do it up in style. We were originally thinking that Simon would be a big floppy and flabby heart but we're thinking positively these days so his costume is big but robust, and strong and vibrant. Jaime and I are thinking that one of us will dress all in blue and the other red and be his pulmonary vein and aorta respectively.
Shimmy's BNP was just a little higher this week with it going from 1121 to 1186. That's nothing. I'm not surprised that it's gone up given that we've mostly weaned him from Milrinone this past week. What I am thrilled about though is that it's only gone up 65 points. This from the little man who used to jump a thousand plus points in a week. 65 points....pshaaa.
I can't believe that tomorrow we're turning off his milrinone. It's only been 13 weeks! "only" riiight. He's looking good though and for the first time today an unofficial departure date was spoken out loud. A week from tomorrow, November 7th, they are thinking about sending us packing.
I don't know quite what to do with that. Faint from excitement? Wet my pants with terror? Not believe it and expect something to go wrong? Start bringing things home? All of the above? Not sure at all. All I know is that next Saturday we might be waking up, taking our time getting out of the house, and heading down to the neighborhood Farmer's market. All three of us. Simon will be seven months old next weekend (Sunday) and three months of that will have been spent in the hospital. Several weeks of those three months will have been spent wondering if he was going to live or not. And, several days of those weeks were filled with tears, collapse, disbelief and terror thinking that our time with our little man was about to end.
And here we are on the precipice of getting Shimmy truly ready to come home. Closer than we've ever been before. I know that we've been off the drug once before but not with Simon being so alive and strong and in his body. A body that keeps gaining weight. Last night's weigh in was 6.98 kilos!! Seeing him naked is a true joy each night for his bath. He's loving being au natural too since he's got some body fat going on and isn't freezing his little noogies off. He squeals with delight post-bath while Jaime is rubbing him down with coconut oil. But if course I do that too...just kidding, I don't really like baths :-D
Ok, little giddy tonight. I'll end with an email from our sweet friend Karen sharing a moment that she had on the 24 bus in San Francisco.
Love to all

Karen writes:
got on the crowded 24 divisadero bus this morning, fred and Zu are squeezing our way on. in the midst of the bus we hear a kid say "hey,that's laura's baby!"
and another kid "what? where?"
first kid "that baby on that button" and (to me) "do you know laura?? she's my school counselor!"
turns out a bunch of kids on the 24 were going to CACS (Creative Arts Charter School) in the morning. the most vocal of whom was a girl named Micah(sp?) and she wanted me to tell you hi.
such a small world, such big love for Shimmy.

Ain't that the truth.

Tuesday, October 28, 2008

Where we're at-- .2 Baby!

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So we're at .2 on the Milrinone friends and Shimmy seems to be doing great. It means that we're one step closer to coming home. It's pretty intense to feel so attached to a timeline but we've been working towards it for weeks so as much as there's so much to be Zen and in the moment about, I can't help but feel attached to the idea of being home in less than two weeks. I feel a little taut about it. Shimmy's doing great. He's a baby, his job is to be in the moment, play with food, sit up on his own, enjoy his new big boy crib, etc etc. I'm the one that's kinda freakin' out.

I imagine that I could get back in to being at the hospital for a longer stretch if I had to. But right now and for the last several weeks, we've been working on going home...successfully (so far). I'm terrified for sure but more than that I think about my son, my wife, and I being in the same location day and night and it makes me want to cry. We need to get that boy a crib asap before he lands at the Fitch-Jenett abode! He's grown so much. Jaime and I were commenting that Shimmy has been happier than he's ever been. There's more smiling than ever before and while some of it is no doubt developmental I think that a lot of it is that he's so comfortable in his body these days.
Check out some of his new activities:
Playing in the new PICU Excersaucer (got to get one of these for home too- He loves it!!)
Look at me sitting up on my own in my big boy crib!!
Just hanging playing with some toys- On my own, sitting up.

Getting ready for MM to come and visit and teach me more Pilates

Gettin' caught up on some Pop Culture- Simon loves him some People Magazine (and some Auntie Dre)

Love to all.

Sunday, October 26, 2008

A Story

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Our dear friend Jasmine wrote a wonderful story about our baby and her dog, both of whom are going through some tough times

Some time ago three friends had a conversation about life and their futures. They sat on the beach under the full branches of a pomegranate tree, purple as can be, and thought together about making some big decisions. They all agreed that children and animals were about the best things to be found anywhere in all of the world. On this night as they sat together under the brightly moonlit sky they decided to make a powerful wish---all together. They joined hands and danced along the shimmering seashore with their eyes closed chanting “bring us a miracle, to our doors, bring us a miracle, on two legs or four!”
And so it came to be. Jasmine soon came to be the mother of a small and infinitely special dog who she named Ticho. And Laura and Jaime became the proud proud parents of a one of a kind sparkly eyed boy named Simon. For some time the friends had to spend time apart, as they lived in different corners of the world, and as you may know, life can get busy these days. Their lives had ups, their lives had downs and as time passed by, and they all continued to fill with love for each other, things seemed like it was going to go well in life for all of them.
Then—what looked to be dark clouds blew into all of their lives. Simon learned that he had a weak heart. Of course being who he was, he fought back and worked his hardest to stick around and make his life happen. After all how could he leave the deep fierce love of his two moms, matched only by his same love for the two of them. Simon was a boy wise beyond his years, and he knew that although this was not what anyone had expected, everything was going to be all right.
Meanwhile Ticho had gotten difficult news too. His back legs were getting twisted and weaker and someday it seemed that he would stop using them. Sometimes when Ticho knew that his mother was not watching, he fretted over his legs. “How will I jump and play?” he thought. “How will I chase my favorite sticks?” Likewise when Mom knew that Ticho could not see her, she worried over those very same things.
And so time passed. And all three moms continued to love their son and their dog, beyond reason it seemed. Simon and Ticho loved them just as much right back. No one knew how their thorns would become roses, but they all did know for sure a Deep True Love and an unmatched appreciation for every moment they had together.
Soon Simon and Ticho began dreaming of new adventures, the way that a special boy and dog will do. Simon became interested in superheroes, and Ticho fell in love with the idea of flying. Simon read about superheroes, he drew them, he even dreamed of mighty superheroes, women and men alike, racing around the world helping others. Meanwhile in his own living room, Ticho would twitch in his sleep, and as he too dreamed, of flying through the air, his floppy ears soaring around his furry little face. If such a thing existed, he secretly would love to be a superdog.
Then one lucky day Ticho and Simon were able to meet. Simon’s moms had a reunion with old friends, and of course the super-special boy was soon introduced to the one of a kind dog. Ticho liked Simon immediately, and Simon liked him right back. In no time they were curled up in the corner of the garden under the shade of a juicy lemon tree, sharing secrets like they had been friends for many lives. They told jokes and they laughed and laughed while they rolled and played on the thick and and luxurious grass.
Suddenly Ticho sat up and said, “What do you wish for, Simon? A deep true wish?...” Simon looked around. He seemed nervous for the first time since they had met. H leaned over and whispered, ever so quietly in Ticho’s ears, “I want to be a superhero.” “No way!” Ticho cried. “For so long I have dreamed of being a superdog! I so want to be able to fly, I think about it all the time. Oh Simon what is a wonderful wish to have.” “It would be,” Simon said. “If I could be one. But I never can be.” “Why not?” Ticho asked, sure that his new friend could do anything.
“Well,” Simon said. “I have a weak heart. Superheroes cannot have weak hearts. “Oh,” Ticho said, some wind knocked from his furry sails. “I have weak legs. I guess superdogs cannot have weak legs.” They were both silent for a few moments, each one lost in their own thoughts until suddenly Simon began to smile broadly. Then he began to laugh and laugh. “What is so funny?” asked Ticho. “We are,” breathed Simon through his merriment. “We make quite a pair. The disabled superhero team. Don’t you see ---you have a strong heart and I have strong legs! If we can figure out how to combine our powers, we can both have what we need” Ticho’s face widened as he realized what Simon was saying. “We can do it,” he said. “Oh Simon, I know we can!”
And from that day on the two were inseparable. And Simon’s heart, it grew stronger and stronger until soon he could carry Ticho around, to rest his tiring legs. Before long Simon could run and skip, and he would carry Ticho over his head and run like the wind. Then Simon learned to ride a bike, and he made a basket for Ticho to sit in while they sped along. It was then that Ticho truly felt like he was flying, they both did, as the colors of trees and flowers whipped by them at lightning speeds. Their mothers had to come and get them, as the rosy dusk of evening fell, for the pair would get so caught up in their superhero fantasies and games.
One night, at a beach bonfire, when Simon’s mom and Ticho’s mom sat nearby, fading in and out of the firelight, Ticho turned to Simon and said, “We did it, you know. We are doing it, Simon. We are modern day superheroes. You –you are making your heart stronger…and you make me fly!!! If that is not a superhero, I don’t know what is. What hearts and love can do---they can do anything!”
Simon thought hard. Did he dare to believe it? Could Ticho be right? Simon’s heart felt so strong and full and loved that he felt like it might beat right out of his chest.
Nearby, the thorns on the heavy laden branches burst into the most luxurious rose blossoms, all at once.