Monday, December 21, 2009

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It's been two weeks since I've written and I'm sorry but it's been a heck of a two weeks.

We've had parents visiting, sisters and nieces too, Dr's visits, cardiology visits, GI visits, colds, backs out of whack (mine not Simon's), Holidays celebrated, Holidays prepped for, Holidays partied, school, swimming, and days of napping and not. It's been a busy two weeks. Here are some of the highlights verbal and photo.

Simon heart function remained the same since our last visit (in Oct)- this is awesome since during that time he's been fighting colds more than not.

I believe Rosenfeld's exact words were "well, it's clear he's got some reserves."

He said it like it was matter of fact. I nearly peed my pants since what we've heard up till now is "Simon's got no reserves given his heart function."

Sweet sweet sweet.

This means that we are tentatively cleared to fly. We're hoping for an east coast tour sometime this fall.

He loved being around his MM and PopPop, is completely in love with his Auntie Jen and cousin Maya, and fared so much better than both his Mama and Mommy in dealing with this stick-around-for-weeks cold.

Aside from that, it's been a sweet, rough, exhausting, grumpy, appointment filled, joyous, family filled, light-is-returning couple of weeks.

I have started getting one of two new tattoos- more on that later. Jaime will be off work for 12 days. 12 DAYS!!!

We're heading out of town for almost all of it, heading up to Gualala for quiet time with Dianne, Ed, and friends. Celebrating, eating, hiking to the beach, and most sublimely, just being together with no where to go and nothing to do.


Here are some picture of the last couple of weeks so you can see what the lovely little man has been up to.

"So PopPop, this is where I go up and down stairs at school,
you can do it with me if you like."

I don't know if you can tell in the picture but he's actually double fisted with two spoons.
That's my boy!

We've had adventures at the park following a very active boy around while attached to his feeding pump. There's some a-typical parenting for you.

We have discovered new tastes in music (yes that is a Grateful Dead shirt and yes we are listening to Casey Jones)
MM has great taste in clothing and Simon is destined to be the hippest kid in the metro area (Is it inappropriate to be jealous of my son's clothes?)

Mama Jaime finally made it to school with us and Simon is patiently showing Mama how to make sweet sweet music.

Not even a little rain could keep us from Oakland's first community Menorah lighting. Even Jen and Maya made it up from LA to celebrate the Miracle (of Oakland having a public menorah lighting or one jar of oil lasting eight days?....yes)

Simon found the right pair of glasses to really highlight his eyes.
Thank goodness because I don't think they were getting the attention they really deserved.

With his buddy Joel at school. Simon loves to choose the right hat to go with his outfit.

Doing the Shake Shake Shake with Katie (his one true love) at school

Playing with another good buddy Eric at school. I think they were working a Ouija board spell

Love to all as we head out of the darkness. It's not so much the metaphor (although that's nice too) but more about having more day light to walk the dang dog. Blessed be.

Sunday, December 6, 2009


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Definition: "of or enjoying happiness; specifically the bliss of God."

If I'm coming from the belief that god is love AND the feeling of deep connection between myself and that which is around me at any given moment- a person, a group, a place, a moment, then great green gobs, I am blessed.

For those of you prone to doing the "poo poo" when either anything too good or too bad is said....start collecting your saliva cuz here it comes.

Let's recap

Simon has cardiomyopathy.
He spent four months of his life living in the ICU with regular blood draws, IV placements, life threatening infections, and a couple of surgeries.
Simon stabilized and now lives in a constant state of decreased heart function.
As a result he is immuno-compromised.
He doesn't eat by mouth and has a tube sticking out of his stomach.
He takes 8 medications every day. Most twice a day, a couple once a day and two three times a day.
He has chronic reflux and vomits several times a day (so much better than it's been but still there)
He hasn't been able until recently to be around groups his own age.
He is 'globally delayed' in walking, eating, talking, and problem solving.
Simon has four different Dr's that he sees, therapy appointments, and an early intervention program that we attend regularly but sometimes have to leave because of his immuno-compromised state.
There is no clear plan for Simon's future as it relates to his health.
We live on one income because of this. One income that decreased by about 30% after Jaime had to switch jobs.
That's all true. Fact.

I know you've read this before. It's just one of those things that every once in a while Jaime and I have to put down all at once. It helps in some way. Especially when we're doing a compare and contrast.

This morning I woke up feeling the contrast so profoundly. I was feeling it from the other side though and it felt so great.
Here's the other side:

Simon is a love!
He now gives kisses on request.
He hugs.
His laugh is 100x more infectious than the swine flu.
He has started mimicking words at an astonishing rate.
He is putting more and more food to his mouth on his own.
We have sweet, sweet morning time in bed with all three (plus pup) of us.
I have a partner that I can bump heads with throughout the day and then fall into bed laughing and being as close as possible with in the best way. ;-).
We have family that supports us with weekly babysitting and respite care.
We have family that give us specific praise and affirmation regularly for all that we are doing and how we are doing it.
We have family that call daily to check in, distract, listen, and ask what we need.
We've been gifted with both a Peete's and a Starbucks gift card by them.
They give us $$ every month to fill in the gaps.
We have time to sit with friends, eat good food, watch a movie, and have loving conversation.
We have friends that call a little more than they expect to be called and it's not a big deal.
We have two working cars, one that's completely paid off.
Aside from some colds and the occasional gall bladder removal, we have no other major health issues.
Glee is on TV and we have a dvr.
There is a farmers market right outside our house every Saturday where we can sit on a blanket and have wonderful people come and be with us.
Did I mention that Simon has started giving kisses on the mouth? Most delicious.
We have an exceptional team of medical professionals, non-traditional medical professionals (Homeopathy, cranio-sacral, reflexology), and OT and PT folks holding Simon in their vast knowledgeable thoughts.
We have amazing aunties and god-mothers that 'hand me down' clothing and toys from their very well stocked closets. ( I do admit that french baby clothes are the bomb!)
Simon is thriving and hasn't been readmitted to the hospital in over a year (not counting his G-tube placement).
His heart has slowly but surely improved.
We have swimming and school and mostly great nap days.
We have visiting Fitchs and Dipanes coming our way.
We have holidays with Jenetts coming up.
The latter two are both things that are wholly sweet and wonderful (aka I really love my family).

We are, in a word, blessed.

All right, it's the next day and Simon is pretending it's a no-nap day. My back hurts, and it's frickin' cold.


Somebody looks good in orange

No, I mean really good

The chin grab is new. I'm thinking it means that he's either going to be a Rabbi or Hip Hop B-boy

Here's cousin Talia getting one of those aforementioned kisses. Too sweet!

Monday, November 30, 2009


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Simon is finally over his cold and man, is he back in the saddle! He started feeling much better just after Thanksgiving and sleeping through the night again which couldn't come soon enough for Laura and I. The mucus from his cold was disrupting his stomach so much that he was waking up every 2 hours or so for the 10 days prior. I thought we might lose our minds.
However, he's now sleeping through the night *when* he finally falls asleep.

Fri and Sat night, he stayed up until 11, after being put in bed at 8, babbling, giggling and generally being insanely cute. And awake. Friday night Laura and I finally got into bed around 10:30 and all seemed pretty quiet. A few minutes later, we heard "eeeee eeee eeee! Oooooh oooooo oooooh! Whooooo WHooooo". As he was trying to get himself to sleep, Simon started running through all his animal noises. I thought I was going to die trying to stifle my laughter so we didn't rile him up with our hysterics. He finally, finally fell asleep after reenacting the Jungle Book.

Then Saturday night, at 10:30 pm, he's still awake, and standing up in his crib, babbling at us. We have a low night light on and I stand up next to him to ask him to lie down. He starts up with his newest trick which is to "whoooo whooooo" at me and pull at my shirt until I turn my back to him, pull my shirt up and show him the owl tattoo on my back. It was dark and I wanted him to go to sleep, so I resisted. For about 2 seconds. He started to wind up with a screech, so I turned the light a little, flashed the owl (2 x since once evidently wasn't enough), let him kiss it and then told him the owl was going to sleep and that he should too. It seemed to work and again, I collapsed into bed in muffled hysterical laughter.

The kid is a frickin character. He's working on new words all the time. He can say "bye bye" clear as day and is working on MM (Laura's Mom), Pop Pop (Laura's Dad), Mamaw (my Mom), lemon, rain, blue, open, again, bed, and probably a few more I can't remember.

He still refuses to try Mama or Mommy. However, when Laura says, "who's that?" and points to me, he responds "whoooo whooooo". Maybe I'll be Mama Whoo Whoo. Sounds like I'm a Ma'dam doesn't it? Mama Whoo Whoo and her working girls. Jeez.

Friday, November 27, 2009

A moment

Locations of visitors to this pageOur heads are bowed and our hearts are celebrating and grieving the life and the loss of little Evan.
Seven years with cardiomyopathy.
Send love out to his family.

Celebrate each moment. I know Scott and Penni did with Evan.

We do our best don't we?

One step. Then another.

Love someone or something right now.


Do it.

I am so thank full.

Friday, November 20, 2009

2 Legit, 2 Legit to Quit

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How could I resist an Mc Hammer shout out on a day like today!!

Today is an auspicous day. There's a lot going.

One year ago today Simon was discharged from Children's Hospital after 4 months in the ICU. We have only been back once for an elected surgery (his G-tube) and once for an ER visit due to dehydration (where thankfully we were NOT admitted).

His heart funciton has improved AND we've had no reason to return save for the occasional "Hi" to our nurses on outpatient visiting days. One year ago. 12 full months. So much has happened. Swimming, crawling, school. Trips to the beach, Mendocino county, L.A., Sushi dinners, dog walks, Grandparent time, Auntie time. Babies have been born, babies on the way. Meds have been refilled, enteral feeding pumps have been replaced. Another cycle. Another return. It's all likely to come around again. And again.

And yet things are different and ever changing.

Today is a marker too.

Today, for the first time ever, the federal government recognizes Jaime as a full parent to Simon. Today the federal governement catches up and recognizes the three of us as a family. It may not recognize Jaime and I as a couple but hot damn, today it at least recognizes the two of us as full and equal partners in parenting Simon.

It's a mostly wonderful moment. I'd say 15%-85%. 15% ridiculous and offensive that Jaime even has to go through the process of adopting her own son that she and I conceived (not literally) of together, were married before he even arrived, and she has mothered since the moment he came into being.

85% wonderfull that there's no where we can't go now that won't recognize her as a full parent. It's not just us and our amazing community. Jaime is Simon's Mama. Always has been. That's not in question or even in celebration. It's the simple relief that there's no one that can take that away now.

Ecchhh, the more I'm writing the more I'm thinking that it's so stupid that we even have to go through this. Now I'm even feeling angry that some judge (nice and lovely man that he was) get's to hand down some decree that get's stamped on a thin piece of tree that says there is this bond between Jaime and Simon. That's BS. Ooooh I'm too angry to keep typing. What a wonderful and f-up world we live in. It's makes me shake a little to think about Jaime and Simon and some one even thinking that they're not family to each other. Grrrrrrr

I'm going to take a break.

What a family...

I will say too that November 20th is auspicious for a third reason in that two of our dear friends became engaged today!!!

Thursday, November 19, 2009

School Daze

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It's been a heck of a week here in Shimmy La land. We've been battling colds, sleeping and not sleeping, making new sounds all over the place, and settling in to a regular weekly schedule with swimming and school.

Mostly it's the school thing that I want to share with y'all. As mentioned before, Simon started the Parent Infant Program a couple of weeks ago. It's a state run program for children ages 0-3 that have developmental delays. There are senior staff there that are trained in both OT and PT as well as several interns in early childhood development. There's singing and signing and snack time and an amazing array of toys to stimulate all kinds of senses and motor activities. Oh yeah, then there's the parent support group that I actually got to go to twice this week!! Simon (as was expected) did not miss me at all while I was gone for an hour. He's quite the independent explorer. What's nice though is the first 5 minutes when we arrive and he's still clingy. After that though it's "Mommy? Mommy who?" until we're ready to leave 2.5 hours later.

It's so interesting to see him be less verbal and less responsive at school. When we're singing the "wheels on the bus" at home or in the pool he'll almost always do arm motions (windows up and down, doors open and closed). At school, where that song is a regular, I see him just staring. At first I was disappointed and then quickly remembered that this is totally new to him, highly stimulating, and challenging him in ways that he's never been challenged in his 19+ months. And, it's awesome!!! One of the senior staff women just keeps telling me how much she notices him taking everything in. I imagine that in a few more weeks as he begins to feel this place and time as 'his', he's just going to take off.

As for me, it was absolutely incredible to be a part of the support group this last week. Twice I got to be sitting in a room with other parents that really get it. This altered,unexpected, no way to plan for parenting where you have to completely recontextualize milestones, strengths, and what a success looks and feels like. Really, it was kind of dreamy. How weird is it to say that?

I've started a new love affair with PIP and I'm so thrilled to have it continue for the next year and a half.

Here are some photos of Simon at his new 'school'.

So much to be giving thanks for again this year. Ginormous thanks heading out 'to you and you and you' (that's a take off from one of the morning songs that we sing at PIP...yes, I'm going to be one of those parents)

Some one's very excited about heading to school
(I can't wait to show him this when he's in High School)

Simon at snack time

Parallel playing with Simon's new friend Robin

Simon working out the order of things (going up the steps and down the slide)

Love to all

Saturday, November 14, 2009


Locations of visitors to this pageThank you all so much for the Vaccine clinic info. Simon actually got his 1st part shot on Thursday and both Jaime and I got ours today.

Guess we're as worthy as those big wigs on Wall Street.

Simon's had a runny nose since Thursday night and mine's just starting to kick in. Fun times.

Shimmy seems to be moving at light speed in terms of working out new words and sounds. In the last few days we've heard new babbling and a distinct "Hi" and "Bye" being used at the correct times. There's also a clearer "baby" and "ball" happening not to mention more than a hint of "Mama" and "Mommy". Delayed shmelayed. He's a genius, the next Stephen Hawking, Lance Armstrong, and Jackson Pollock in the making- minus the wheelchair, testicular cancer, and alcoholism.

Jaime and I are just trying to keep up with the lack of sleep and craziness of life in general.

I love him so much it's impossible to explain.

And thank you all for the love and well wishes for our dear friends and their little baby girl. Looks like you all have worked your magic again (not to mention she's kicking some life force ass) because little Jonah girl is on the 'well baby' list and will hopefully be coming home in a few days. All systems are a go.
Thank you all for love. It's a powerful thing.

Wednesday, November 11, 2009


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It's a great name for a horse.
It's also how I'm feeling right now.
So many things and each moment that comes along to remind me to pay attention feels like a spring loaded trigger with a line attached to it. It tugs at another time, another place, another feeling, bringing it back to the presence with force and speed that only a trigger can.

Sweet new baby girl Jonah. Precious and fragile. Scrappy little spirit.

Children's ICU (NICU or PICU it's relatively the same).

Waiting, not knowing. It's a kind of 'not knowing' that unless you've held your breath with someone else's life in the balance, you can't understand. It sucks. Literally. It feels like there is a vacuum pull, massive like a black hole and you're
keeping your feet firmly planted through only a spiders gossamer thread. Hope. Faith. Humor. People magazine. Whatever it is, it's holding you but you don't know for how long.

I know these feelings so well. They're still present for me although they seem to be standing farther back in the line of feelings and memories as of late.
There are fresher ones that I prefer to be in the front of the line, swimming, first words, first steps taken etc, and even not so pleasant ones that are there fresher than the hell of the ICU. Blood draws, echo cardiograms that show no change, an ER visit for a stomach bug...they're all there. And, those old ones are still there. That absolute devastation that came with the first diagnosis, each setback before discharge, the wondering and decision-making that held the weight of a life.

This trigger thing is so fascinating to feel and watch from a little outside myself. I am alternately right there with our dear friends, feeling on a cellular level some of what they're feeling.'s not my son. We are not in the ICU.
Simon is in his own bed with the lights off babbling to himself as he soothes himself to sleep. There are no alarms going off, no lights that never dim, and no lines attached to him via needles or tubes down his throat (ok ,there's a g-tube and an overnight feed happening but it's not the same). It's a part of him, a part of his past and mine that makes up who we are individually and as a family. But, it's not right now.

My heart feels so heavy right now. With my own memories and love and hope for that little girl Jonah.

And love and hope for my little boy Simon.
We are still connected to that gossamer thread that ends in that black hole. The thread has strengthened over time and now feels more like one of those thick corded ropes that tether ships to port, but it's not that far back that it was spider web thin.

It also thins again at certain times in certain places.

We had to leave 'school' on Tuesday after only being there a short time. Another parent mentioned that his kids are home with the flu and while he's not sick and neither is his son that was with him, those germs are there.

It's so great that he was thinking of Simon in that way. And it sucked so hard that we had to leave just when Simon was getting into the mirror/self awareness activity that was beginning.
I felt that cord thin again with the reminder that Simon has no reserves and while he may look the picture of health (a strikingly beautiful picture of course) he has no reserves because he lives compensating for heart failure and the flu is not an option for us. Not a clear danger. Not a direct exposure. It was my call.
It sucked.

Feeling a fraying thin cord section just there.

So I'm living with the multiplicity of fragility, resilience, unfortunate knowledge, the gift of passing it on to where it might be needed and help, a sweet delicious lovely boy, and an amazing new Jonah girl that is welcomed into this family with tidal waves of love and arms ready to hold both her and her parents as they are just setting out on this road.

I'm exhausted.

That, and we (all three of us) have not gotten our H1N1 vaccinations yet but employees at Goldman Sachs and Citibank have. If I weren't so exhausted I would rant about that. Instead I'll post some pictures.

From Halloween


No, that's not a monkey on my's a Gorilla

Sad Gorilla

Happy Gorilla

Very Happy Gorilla

Simon and Mommy at the Celebration of Life dinner (commemorating Mommy making it through her own near fatal motorcycle accident)

Monday, November 9, 2009

Deja Vu

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We're having a terrible sense of deja vu. Very close friends have a newborn in critical condition at Children's Hospital Oakland (CHO) and we're having flashbacks right and left as we gladly support them.

One of our dearest sets of friends welcomed their almost 9 pound daughter, Jonah, early on Saturday morning. The labor all seemed to be going well and the baby seemed fine until the very end of delivery. It then became apparent that the baby had pooped in utero and breathed in the poop, completely filling her lungs. This meant that she couldn't exchange any oxygen for quite a while after she was born. The team got her lungs cleaned out and got her on a ventilator right away but quickly determined that there was brain damage and that her body was having a really, really hard time. They needed to take the baby to Children's Hospital Oakland right away.

Our friend's husband called us at 3:30 a.m. to tell me that his wife was okay but that the baby was not and asked me to be with his wife in the hospital so he could go with the baby to CHO. I immediately jumped out of bed and then stopped, trying to think about all the things I knew one needed when going to the hospital. It was frightening how easily the list came to mind.

Shortly after I got to the labor room, the transport team brought Jonah by so our friends could see her before she got taken to Children's. She was big and beautiful and had lots of dark curly hair. And looked eerily like Simon with her equipment and ventilator and team of people around her. My friends said their good-byes to each other and then I crawled in bed with the Mama, snuggling her, petting her head and just listening. We cycled through the now familiar pattern of conversation that plays right after something really traumatic happens from "everything's going to be okay" to "what the hell is going on" to despair to chit chat and back to sobbing. I just tried to ride it with her, knowing that we would just keep switching gears until we slept.

Once day broke, I started making phone calls, mobilizing the cells we already had in place both from when Simon was in the hospital and from the ones they'd set up before Jonah's birth. Our dear friends are so used to these kinds of calls, between Simon's illness, Laura's gall bladder surgery, two cancer scares with folks in our circles that by now that everyone just suits up and gets to work without much discussion. It's awe-inspiring and heart-breaking.

By mid-morning, we had someone else with Mama and I went home to hang with Simon so Laura so she could go to CHO to be with Dad. She worked her magic there, getting them set up with long term ID badges, long term parking passes, tips and tricks for schmoozing nurses, what to eat in the cafeteria, etc. She ran into a few of our docs who were shocked to see her there and then relieved to hear that Simon was okay. We're making sure everyone in CHO who meets our friends knows "they're with us". I put out an APB to all the nurses I'm friends with on Facebook and asked them to look out for our friends and kick the asses of any nurses who gave them a hard time.

I keep reminding myself and Laura that this is not actually happening to us. It is, in the sense that we are so close to this other family, but for once it's not our kid fighting for their life. Not our kid that everyone is thinking of and focused on and worried about. It's such a goddamn relief. And it's so triggering to be doing this again.

We both slipped into the mindset we had in the hospital and are trying to translate for them so that they can have the tools we had to forge ourselves. We both feel heavy with the intensity of what is happening. At one point I said to Laura, "We're the elders now". I truly feel like an adult now, leading these new parents, blinking and stumbling in the harsh light of trauma, through the minefields we escaped almost a year ago. It is such a curse and such a blessing to have this esoteric set of knowledge we've gathered- essentially how to survive in an ICU, how to thrive in the face of parenting a critically ill child.

Early that first morning my friend kept saying, "how do I do this?" and i just kept saying, "you already are". We talked about how we can't really protect our children, we can't stop the hurts and it's scary. I had to remind her that there's a lot we can do: we can warn them when an owie is coming, we can hold them or touch them when they're upset, we can just show them that we're there and teach them how to be resilient, to keep going when things are really really hard and sometimes even have a good time in the midst of hell. We are magnificent creatures who can thrive against all odds. Simon is living proof and he's going to show his cousin Jonah how it's done.

The latest update is that Jonah is steadily trucking on the right path and may be off the ventilator and off the brain treatment regiment tomorrow. Itty bitty baby steps is how we do it. With a crazy ton of love, too.

P.S. Simon is 19 months old today!

Monday, October 26, 2009

Nothing's Different and Everything's About To Change

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It's been a heck of a week here, (the last one, not this one starting). I've not written because it feels like there was always something 'big' happening the next day and I wanted to wait so I could get it all in one post.

Here's what we've been up to:

1) A Cardiology visit

2) A nutritionist visit

3) A visit to the LEAP program (just me)

4) Two Jaime/Laura Wedding Anniversaries
5) Auntie Abby back in town

6) Great Aunts and Uncles in Town

7) BNP results

8) Hair Cuts

and of course lots and lots of swimming.
Let's start with the heart shall we?

Of course there was the build up. I've talked about it before but this visit held a little extra weight as it was the one that was coming after 2 months of new treatment (homeopathy as well as CoQ 10) not to mention such a clear change in energy and digestion which I can only imagine helps the heart not have to work so hard.

There was that ever present fantasy of going through our ECHO and then having Rosenfeld come into our little room and say, in that voice that neither forebodes bad news nor hints at good, "well, his heart has improved significantly." I can hear it in my head. I've played that tape over and over again...just not in real life.

Alas, not this time. The let down was softened somewhat by something HunkyPants did say in real life though. He'd listened to Simon's heart, wrestled with Simon playfully over his Stethoscope, and watched him cruise around the exam room.

"Given his heart function and how he looks....I wish all my patients looked like Simon. He's just doing great!"

That sure was nice to hear. And it's true. Simon has just been full of life recently. Not just full of life but joy too. I can go on and on about "quality of life" this and "quality of life that" but you just need to spend 5 minutes with the little man and you get it. He is one happy little dude, ready laugh at just about anything and everything. What a wonderful way to walk through your day.

Then we met up with a nutritionist on staff in the GI department to talk about starting Simon on a whole foods diet. There's a formula out there that our insurance will cover (we think) that includes chicken, green beans, cranberry juice etc, etc, but the second ingredient is still corn syrup so we may in fact try a blenderized diet where we take fun real food ingredients and blenderize them to a pulp (actually a lot finer than pulp but it's a good catch phrase) so then it can be funneled through his pump tubing. Same calories, same nutrition, possibly even better, AND it's real food in his tummy. We've learned that a lot of folks out there believe that a blenderized diet is, in fact, the first step, or a first step, in getting the body and mind ready for oral consumption. In some weird way it makes total sense to me.

If the stomach is sending messages to the brain that "this stuff is crap and while it may be easy to digest, it's still crap and not giving me so much of the other things that make stomachs happy (good bacteria, etc)" not to mention the nasty nasty that it tastes like coming back up. Now, I know that vomit is not something that I've thought a lot about in terms of taste variations, but if that's the only way that the mouth is learning about taste, then it's even more gross to think about Simon's limited tasting experience (minus the choco pudding of course).

So Jaime and I were really excited to put in the extra work to see if a blenderized diet was an option and how to go about making sure that he was getting the calories that he needed along with the introduction of some real foods. We're in full faith that this is another step to getting Simon closer to eating through his mouth.

With our pediatrician on board and an amazingly fast turn around on the HMO red tape, we had an appointment within a week.

We didn't know who it would be (the scheduler said that's just how it goes) but we had the name of one nutritionist that was not recommended to us and the name of the ICU nutritionist from long long ago, Susan Bessler, whom we loved and appreciated having on our team when the whole Breast Milk vs formula showdown happened. Remember Susan?

When we were talking with the scheduler we were informed that Susan didn't even show up on the calendar, so we couldn't make a specific appointment with her, but if we wanted an appointment this coming Thursday, we could have it. She just couldn't say who it would be with.

Lo and behold, as we're waiting to be called for our appointment who should walk through the waiting room but Susan Bessler! And she has an appointment with us! I'm just thrilled. She knows Simon, she knows me, and oh yeah, she knows Simon. There's something so relieving about not having to relay the whole story, so much of which can't really be relayed with words, and to have the person that you're meeting with (to begin a new something or other) already know and be a huge fan of little Shimmy. It was awesome! And Susan was on a roll!

Within minutes of our talking she was already printing out a copy of a new 'whole' foods formula for Simon (that looks like it may even be covered under our insurance) as well as emailing me within 24 hours two separate blenderized food recipes that would offer Simon the same caloric intake but all sorts of new and exciting foods for his tummy to get to know. Very exciting. We'll keep you abreast (starting with some chicken breast) of how it all goes.

Next up was the PIP program, where Simon will be starting this week. It's essentially a daycare/preschool program for children ages 0-3 with developmental delays. We were referred by the Regional Center and had an intake session with the director about two weeks ago. She had said that she wanted me to come and visit the center without Simon so that I could assess whether or not it might be appropriate for him given his compromised immune system. It's a two and a half hour program that might have up to 10 other children and their guardians that includes circle time, singing time, organized play time, snack time, free time, and a support group time for the parents and guardians.

I'm alternately terrified and chomping at the bit to get started with this program for so many reasons. Here are two reasons:

1) It's the height of cold and flu season. We'll be in an enclosed space with 10-20 people and all of the germs that they bring.

2) We'll be playing and watching and singing and signing (they do a lot of Sign Language) with 10-20 other kids and adults!

I feel both on such a cellular level. I believe without a doubt that this will catapult Simon down his road of communication and movement and socialization in ways that only this kind of environment can.

And, I am so very, very frightened of him catching anything that might send us back into the hospital with a load too great for his still-dilated-and-operating-at-a-little-more-than-third-of-what-it-should-be heart.

(quick aside)

Growing up, I would take long daydream sessions playing out what super power I would want if I fell into a vat of radioactive waste, or got struck by lightning, or granted a wish by some alien race much smarter than our own. It was usually flying. There were variations depending on how I was feeling or what comic book I was into that week.

These days my super power would be the ability to see and suss out various germs. It would be along the lines of being able to see particles of dust when light hits the right way in your living room that desperately needs to be cleaned....but with color coding.

I know you're asking right now "Laura, if you could have any super power, why not have the power to heal with touch or thought or something like that?"

C'mon now, that's not realistic. That would never really happen anyway so let me have this 'more realistic' smaller super power fantasy.

Anyway, I would be able to see those wicked red flu germs flying through the air or those nasty green cold/sinus infection germs hanging out on people's hands and know right away who not to touch and what event we could stay at or leave. But what would my super power character name be? I'm taking recommendations.

Back to Simon and the PIP program. I visited for about 45 minutes (thank you Grandma Nola for hanging with Simon, watching trains, and talking about the meaning of life). I'm SO EXCITED to see how the little man takes to his new Tuesday/ Thursday morning activity.

I'm so excited to sit in a room with other parents and just know that they 'get it'.

I'm so excited.

Up next were the anniversaries. Jaime and I had two this past week. October 19th was our legal wedding anniversary (1 year) and October 22nd was our outlaw wedding anniversary (4 years!). We got to go out just the two of us on a date to an amazing restaurant in North Beach (Da Flora- Sweet Potato Gnocchi in two different kinds of cream sauce- sage and bacon!) and then later that week got to go out with Simon for Sushi where he tasted some miso soup and gnawed his way through half a lemon. That, and Jaime and I spent hours talking about how we just couldn't imagine a more perfect partner to share in the joys and challenges that have come our way since we've been together.

Abby Pike is back in town and Simon is clearly going to have some issues to work out with redheads and how he's got a preference for them. Simon loves him some Auntie Abby.

He also got to spend some time (outside of the hospital) with his Great Aunt Molly and Great Uncle John (who usually goes by UJ, now GUJ). We had a lovely brunch on Sunday and it was super special to have them see him now versus the last time they were able to visit.

Next up was our BNP test results coming back. The BNP measures a peptide that the heart releases when it's in distress. A score of 100 is a typical for a healthy heart. (Quick recap: Last time it was 547. At it's worst it was 3000.) We've been watching it come down consistently with a bump up here and there.

Simon's BNP right is 364!!! That's the lowest that it's ever been. It also means that his heart is approximately 90% less distressed than it was just about a year ago. 90%!!! less distressed. That was enough to make me cry. Say it out loud. Simon's heart is 90% less distressed. It just sounds so good to say.

Simon got a haircut. Mommy got a haircut. Simon looks a little like a republican, mommy looks like who he'd be trying to deny right the marry. Mostly they just look like twins.

Mama cut my hair. Lookin' good right?

Well hello you handsome devil. Come here often?

G'paw, I love it when you play pillow fight with me. AND I love it that Mama fixes my hair right away after.

Look who can now climb up into the rocking chair on his own now. That would also be Simon who took his own pajama top off after waking up and playing in his crib on his own for an hour while the mommies slept in. Gotta love that boy!

Thursday, October 15, 2009

Bless the yoginis

It's been quite the ride here since Tuesday. The rains came and with them great change, some dips, some climbs, and some pudding and some drinking! (not me, Simon, although I thought about it yesterday. The drinking not the pudding)

So here's the skinny.
Tuesday we were home bound because of the rain. The first part of the morning went by smoothly (we did get out for a short dog walk with Simon being the only one staying dry- thank you BOB weather shield). We played, we listened to music, we watched a video.

We didn't vomit.

That's right. I said we didn't vomit and by 'we' I mean Simon. Not only did we not up-chuck but by 11:00 we'd had two really nice poops and not a bit of reflux and/or gagging.

I don't know why I thought it but I figured that since we were having such a nice morning, why not have some no pressure food play while we're just hanging out. No high chair, no big fanfare, just a little teething biscuit to start. A little syringe with water/juice and we're off.

And he's taking it all and putting it to his mouth. My heart is beginning to beat faster in my chest and I have visions of my child eating by mouth.
So I put a little Pediasure in a sippy cup just to see what'll happen.
This is what happened.

You can hear me catch my breath because it was so friggin' awesome. I couldn't believe it. And you only get a little slice. He put that sippy cup to his mouth a good half dozen times, swallowing a little each time. He licked a yogurt pretzel, slobbered all over a teething biscuit and smiled through out all of it. No gagging, no barfing, no turning his head away in aversion. The planets were aligned, the element of hunger was present just enough, the pediasure was just the right temperature. So what it was in the bathroom?! So what if we didn't leave the house all day? Simon was on a development tear. I was high.

PROBIOTICS!!! (Loud Hallelujah Chorus)

But let's start from the very beginning. It's a very good place to start.
Back when I was pregnant with Simon I took a yoga class at the Piedmont Yoga Studio with a teacher called Cynthea Denise. It was an intense class and for several reasons prenatal yoga was not for me. Still, it stuck with me and several months later when I was taking a break from being at the hospital (Barry and Larry were visiting so it was almost exactly a year ago) I ran into Cynthea in our neighborhood.

She asked how the baby was and of course was shocked and saddened to hear about Simon's condition. Since then we've run into each other several times in our neighborhood and she always asks how Simon is doing and says that she thinks of us and sends love and light.

Last week we run into each other outside of the local bakery on one of our morning loops and she says she's been thinking of us. She's recently done a wonderful workshop with this woman and during the class she learned something that made her think of us.

Mind you, I've only taken one yoga class with this woman almost two years ago and maybe run into her half a dozen times since.

She said that in this workshop that she took, her teacher made this amazing connection between cardiovascular strength, digestion, and the immune system. She thought of us and Simon's condition and how he needed to start Probiotics (the good bacteria found in yogurt and such).

What amazed me first was that she was thinking of Simon at all. Once again, that from seemingly no where comes this care and love for this little being. Second was that she had listened so well to the little tidbits of information that I had offered regarding Simon's condition (that he had been on hardcore anti-biotics, that he's tube fed, that he struggles with daily vomiting nausea and reflux) during the few and brief on-the-street-fly-by- meetings that we'd had. And thirdly (back to the first one really) that she'd been at a workshop, heard some new piece of information, and was connecting it to some person that she hardly knew but that had clearly made some kind of impact on her.

I later on in our conversation learned that she'd been a pediatric nurse...but still.

I figured it couldn't hurt, it might help, and let's check it out with GI and Dr Gleghorn and go for it.

We started Monday night and I gotta say, there's nothing else to attribute Simon's drastic new self to. It's been three days now and while Wednesday he was not seeming to be interested in food again at all (and I was crushed after the high of Tuesday- F***ing roller coaster), on Thursday we had an OT session that actually made Paula, our feeding specialist, cry. She had to get up and get a tissue because she was so emotional.
Wouldn't you be if you saw this....
Yes, chocolate pudding really makes his blue eyes pop but damn it if he didn't take his spoon and dip it into the mound of pudding and BRING IT TO HIS LIPS!!! I would say that the little man did this no less than a dozen times. There was swallowing going on too!!! Even some straight up licking!!
Now it's not the typical bringing a spoon to a mouth that we think of and if you saw anyone else doing it you might wonder why they were playing with their food so much and not just eating it....but holy cow it was amazing to see Simon doing it. We're oceans and continents away from getting off enteral feeds but I feel like we've at least landed on the planet of oral eaters and made first contact. Wooooo Hoooooo!
Chocolate pudding it is. Chocolate pudding for everyone!!
Really, I think it's the probiotics. I think all of a sudden Simon is digesting his food at a normal healthy rate and digesting it well given his healthy let's clean everything out poops. He's different. He actually wants to bring things to his mouth now that the vomiting and nausea have significantly decreased. And who wouldn't?!! If you're only experience of your mouth and stomach was things coming out, and not pleasantly, why would you ever think of putting something in there? Not to mention I think he may be experiencing hunger for the first time since he's been in the hospital (minus that one fun time when he was bacterimic, only on maintenance fluids , and fighting for his life).
Thank you Cynthea Denise. Thank you for holding us in your heart. Thank you for keeping inconsequential (to you) details in your mind so when something came along that might benefit Simon, you made the connection right away. Thank you Probiotics.
So as I write this I'm remembering and feeling the high of the last couple of days. It's incredible.
Simon is just at the tail end of what will be at least a 2+ hour nap and there's a weekend with not much planned ahead of us. I am breathing in and out trying not to focus on the fact that while he fell asleep this afternoon there was a definite sweat starting. We have a cardiology visit coming up this Tuesday complete with blood draw and Echo Cardiogram. Two months of homeopathy and CoQ10 plus now probiotics and I'm fantasizing again about the "his heart has improved significantly" option. I'm holding out the hope and not letting myself get too excited (especially since he's sweating right now) but it's a possibility right? It could happen.
And it could happen that we stay on this slow, very slow, infinitesimal, road to getting better. I don't even want to think about the sweating and backtracking option . Don't want to.
Not gonna.
Here's to living in Simon's big teaching. Be in the moment. Right now is a really good one.

This one's for Blarry. Go Lions!!

Post Sippy Cup Face

Simon's new 'smile'

....And there it is for reals
Probiotic love to all!

Monday, October 12, 2009

Adventures in the Wilderness

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We got back safe and sound from Yosemite last night. It was great and hard and quite a trip.

Friday, Laura, Simon and I met up with our friends Joan, Dre, Kim and Sommers (4 years old) at the house of Skeeter, Saun-Toy and Moses (8 months old) to head out on our trip to Yosemite. We ended up not leaving until 1:30 p.m., but thought, "No problem, it's only supposed to be a 3 1/2 hour trip".

Yeah, unless a car fire closes down the left lanes of the major freeway out of town and delays us by at least 1 1/2 hours. Then we HAD to stop for In and Out. We finally cross into the park at 6:30 p.m. and it's getting dark and I have Google map directions. They suck. I end up getting us lost in a national forest,, as night is falling and the only map we have is from the park service and has no street numbers or distances listed so we drove around in the wilderness for another hour and a half.

"No problem", I think, because we're supposed to have electricity at our camp site. We were staying at the Housekeeping Camp which has 3 sided cabins with a tarp on the 4th side and electricity including lights and an outlet (for a space heater in our case).

This is so great, except just as we arrive, the power goes out in the whole valley. Oh, and Sommers, the 4 year old, is recovering from a cold and has reactive airway disease and has been puking since they crossed into the park because he's congested and the cold really probably won't be so great for him. Oh, and we have an 8 month old. Oh, and Simon who is heart failure. And it's supposed to be 38 degrees. And we have no light, no lanterns, no power and we haven't eaten and it's 8 o'clock at night. Oh, and Joan and Dre's cabin is occupied by someone else and the front desk says they're on their own to figure it out.

After a brief conference in the parking lot, we decide we'll just see if the Awahnee Hotel has a room. Sure it's $400 a night, but we can sneak in 7 adults and 3 kids into one room and it will be affordable. Great plan, except there are 2 weddings there that night and they're booked. So, it appears that we will either have to drive all the way back home (at least a 5 hour trip) or make due. So we make due.

Joan assesses that one of the cabins next to us is empty, so Joan marches to the office and tells them that they'll be staying there and if the management has a problem with that, they know where to stick it. Skeeter butters up the neighbors on the other side of us and soon we have a propane stove, 2 propane lanterns and the use of their fire pit that already had a fire (they were actually going to stay overnight in a hotel b/c the wife was sick). Laura draws Simon's meds by carlight and gets him warmed up with four layers of sleepwear.

We got the kids settled and Skeeter and Saun-Toy made a yummy dinner and we sat around the campfire making S'mores and relaxing. The adults finally went to bed at about 11. The babies were a bit noisy all night but everyone seemed warm enough. At 4 a.m. the power came back on (we evidently left the light switch "on") and we turned the space heater on.

The next morning I walked out of our cabin to find that we were RIGHT on the river, in a most gorgeous spot. Click here to see pics of our trip:

We didn't really make it on any big walks, but definitely enjoyed the scenery. Joan, Dre, Kim and Sommers decided to leave on Saturday afternoon because Sommers still wasn't feeling well. The rest of us hung out that night eating chili, cornbread and brownies and tried to go to sleep at a reasonable hour. Good intentions, but the babies kept waking each other up all night and I think we maybe slept from 6-7:30 a.m. Still, it was so gorgeous when we woke up, I hardly cared.

We had to pack up camp in a hurry and hustle over to the Awahnee Hotel for a spectacular buffet brunch. Simon was PISSED about it, unfortunately. He was very tired and not happy with all the hubbub in the room, so Laura and I took turns walking him around while he screeched and hollered. We were very popular with the wealthy older couples dropping kajillions to stay there, let me tell you...

After a delicious brunch (highlights included amazing Eggs Benedict and a mango custard) we split up so Skeeter, Saun-Toy and Moses could go on a walk and we headed home with a sleeping baby.

It was a little challenging, a lot fun and definitely something to try again in the spring. Who knew we could go camping with a baby in heart failure?!?