H1N1

Thank 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.

Trigger

It's a great name for a horse.

It's also how I'm feeling right now.

Triggered.

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.

And...it'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

Kisses!

No, that's not a monkey on my back...it'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)

Deja Vu

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!

Nothing's Different and Everything's About To Change

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!

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.
http://www.youtube.com/watch?v=6D1wFOl74Zs

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!

Adventures in the Wilderness

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: http://picasaweb.google.com/jaimejenett/YosemiteOctober2009#

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?!?

My Heart Hurts

Not Simon's.

Mine.

We had our 18 month PT evaluation today. I really like and respect the therapist that came. She was the same one from last spring and for the most part has a great way of explaining and communicating what's going on.

So here it is. There is nothing obviously wrong with his working parts but for some reason he is not walking. He has no tremors, no consistent 'toe walking', he has great muscle tone and good balance. And he has made about one months progress developmentally in the last 6 months.
"He seems stuck."
"He should be a toddler by now."

I felt so stupid. I heard that "should" and it went straight to my heart.
It landed on top of all the other "shoulds" that are piled there that I work so hard (and well) not to give credence to. And each time a new one arrives and lands on the top of the pile, all the ones below it stick out their little legs with their combat boots on and start the sharp kicking to my heart.
"Simon should be walking."
"Simon should be eating."
"Simon should be talking."
"Simon should at least be saying Mama."
"Simon should be spending more time around other kids."
"Simon should be able to take a trip to visit his New York family and see where his Mommy grew up."
"Simon should be able to go to daycare."

Simon should have had months 4-8 of his life free of ventilators, blood draws, PIC lines, spinal taps, central line placements, life threatening bacterial infections, talk of heart transplants, cardiac sweats, Echo cardiograms, and vomiting.
I could go on but then I would just be 'should'ing all over myself.

So once again, a certain reality just doesn't jibe with another. How to reconcile the reality of the sweet, super happy boy that spends most of his days enjoying, exploring, and delighting in his world, with the other reality of my sweet fragile Simon that cannot afford to get sick lest it send him back to the hospital and IV medications, who cannot speak certain sounds at all (no back of the throat G or K sounds yet), who has yet to master three let alone the twenty words that he's supposed to be using, who cannot walk yet, and who fights eating with great stubborn refusal and discomfort/fear.

They are both Simon Lev Fitch-Jenett and I love them both. I get to spend most of my time with the former, although the latter is always present, just sometimes emerging from shadow.

Both can melt my heart in my chest. One more often with laughter and delight and the other mostly with dead weights like the ones I used to use scuba diving...their only purpose is to make you feel heavy and keep you down.

So there is nothing wrong with Simon. It's likely that if we held off with PT, "at some point he'll walk." And she'd like to see that happen sooner rather than later. Up until Friday when Simon turns 18 months old, we are still on the chart for 'normal' walking time. After 18 months he is officially delayed. Maybe he'll start walking by Friday. And, maybe we'll need to start the process of getting a referral from our pediatrician and getting on waiting lists and starting PT and paying extra co-pays and having additional appointments and blah blah blah.

I'm not feeling as sorry for myself as it sounds. She did say over and over again "he's great, he's doing great, he's looking great, you all seem to be such a great family." It's true and I know it.

I also know that Simon works best when he's on his own timeline with gentle nudges in the right direction.

I also know that my heart hurts and I'm grieving for all those "shoulds" that we just don't get right now.

I also know that Simon Lev Fitch-Jenett is one of the happiest, most engaged, loves checking out his world, little dudes that I ever met.

Simon Eats and Walks!!

In his own special way.

Check out the video http://www.youtube.com/watch?v=WyuCwqxDHM8

and

he may not eat food but he sure loves to munch on his foam pillow
and

make like the chic from the Exorcist
Sorry to be a tease with the title of the post but I just had to report that we've had a couple of days with Simon acting like a 'new man'. He was a little Juggernaut last night 'running' with assistance between Jaime and I at a lovely dinner with our friends Justyn, Kim and Amira (and then staying up till 10pm just for fun). Then this morning he had a ball playing with some really delicious Pea soup at Brunch with G'pa Bruce and Grandma Nola. I think some even made it into his mouth!

A lovely weekend all around.

It was a great start to what promises to be a full month of October. We have a PT eval tomorrow, GI appointment later in the week, camping in Yosemite (little nervous about that), a Cardiology workup, and visits to the pediatrician to start our flu season regiment. Whew!

But this is where we're starting from so right now it's all feeling good.

Unbelieveable allies

I know we have great friends. I know that our community is made up of very very special folk.

And

I am blown away.

So, Jaime had put it out there on Facebook that she had just filed official adoption papers for Simon and had commented on how asinine, let me repeat, ASININE, it is that she has to pay $700 dollars and go through a home visit and court appearance to adopt her own child. I can't even begin to say how offended I am by the process that even though Jaime and I were domestic partners long before we had Simon (married even in the state of CA) we still have to have a social worker come to our home, check us out, requiring four character references, and $700 dollars (and that's only because we are doing it ourselves and not hiring a lawyer saving us hours of busy work and thousands of dollars) to have the rest of the country recognize Jaime as Simon's mother.

That's right. If we left the state and (poo poo) something happened to me and/or Simon and I at the same time, Jaime might not be allowed to see us in the hospital, make decisions and/or automatically be given Simon to care for. Not to mention if (poo poo) something happened to Jaime Simon would not be eligible for Jaime's Social Security benefits because she is not seen as his mother on a federal level.
But enough about that....

So Jaime has put it out on facebook so folks could be happy for us in her finally becoming a true "parent" to Simon (please read that with extreme sarcasm). About a week later a letter comes to us in the mail from our good friends Daniel and Katie (dear friends from Jaime's stint in North Carolina at Grad School). They are not lottery winners. They are not independently wealthy. They are in fact both students (PhD and MD respectively) AND have a new baby themselves. Not rolling in it.

In the envelope is a beautiful picture of themselves (Eli the kid is quite a looker), a lovely card with pears on it, and......a check for $100 that we are required to put towards Simon's adoption fees. They "will not take it back" and if we are too proud (which we are not) to cash it for Simon's fees we should please donate it to a worthy marriage equality organization.

I was rendered speechless with a heart that threatened to burst with love and pride in our amazing friends and their very very powerful ally action. Who does that sort of thing...so personal, so political, so out of the blue, so loving, so righteous (in the literal and 70's slang sense of the word)?

Our friends do that. That's who.
It felt incredible. We are soooooo blessed.

Oh yeah, and we have our home visit this coming Wednesday. Any one want to dog-sit our psycho pooch? Jaime may be a perfectly acceptable 2nd parent. I don't think Roxie would make that good of an impression.


Love to all.

LF

Shout Out to The Mommy In The House

We were with friends who have a baby and one of them was talking about how hard it is to work and run a household and have a baby- there's always clean laundry piled up and the house is always a mess and there's always a scramble for emergency childcare when the nanny is sick, and someone has to take the pet to the vet, etc etc. Makes my shoulders tense just thinking about the juggling act.

And then I realized that, while my life is really stressful for a lot of reasons, worrying about the household level of detail doesn't exist for me because Laura has made the sacrifice to be home. We don't have to wrangle and scramble and finagle because Laura has essentially put her life on hold to be there for Simon, but has also picked up so many extra things along with that. She takes the dog out most of the time, takes the dog to the vet, takes Simon to medical appointments, does laundry, does dishes, grocery shopping, mailing things that need to get mailed, loads runs and unloads the dishwasher, etc, etc, etc.

It's all the little papercuts that add up to "death by a thousand paper cuts" that I don't have on top of everything else. I don't have to worry about all those things because Laura does them. On top of keeping our baby alive, giving him his meds, his feeds, wiping his tears at the doctors, keeping him stimulated, worrying about his barfing, etc, she does all the household things so that we can keep going. And doesn't get paid for it. And is alone a lot of the time.
I forget sometimes, all the things she does, all the things she is, all the ways she loves and supports our family. So this is my reminder.

She doesn't just do the little stuff around the house. She manages all our money. She has the hard conversations with people when I'm too scared to sometimes. She gets me treats when she's out for herself. She listens to me at night when she's really tired and I just want to talk and talk and talk with her. She loves me even when I'm grumpy and frustrated with clutter and flinging toys about in the middle of a temper tantrum about all our "things" everywhere. She lets me put Simon down to sleep even when I know it physically hurts her to hear him cry and wants to do it herself. But she lets me do it because she knows it's important. She calls me at work just to talk to me. Because she loves me. She manages to do all the stuff I already listed, love our baby, love our dog AND love me. Sometimes I can't believe how incredibly lucky I am.

Oh, and she made and carried Simon. And pushed him out. Of her body. For us. So we could have a child.

I told her tonight, "I can't imagine marrying anyone else in the whole world who would fit quite as well as you do". And I can't. She's perfect, in that way that perfect can exist in real life.

'earing Update

So the news is Simon is not deaf.

Looks like there is really good responsiveness in terms of his ear drum working and cochlea responding but there were some funny dips below 'normal' on the main test.

Meaning...nothing conclusive and we have to come back in 3-6 months when he's less likely to be squirmy for the sensitive in the ear test and more likely to be reliable in the test for older kids.

I know I should be relieved AND to be back in that inconclusive place with more tests to come make me just a little nuts.

We've certainly 'set up house' here before. Just waiting and letting the little man be on his own timeline. Jaime and I know this drill. I know this drill. I live this drill on a minute to minute basis with his heart, his eating, his walking, his talking. Like any baby/toddler he is on his own schedule. I feel like there's just a little more at stake with Simon. (I know there's everything 'at stake' for every child, we just know up front where the little man is coming from)

Am I thrilled that Simon does not seem to have significant hearing loss? Yes!!!

Did I want to leap for joy every time he turned his little head toward the sound coming from the speaker to his right or left? Yes!!!

Did I want to strangle the hearing specialist when she kept saying "well, he's not deaf." YES!!!

For sure there was a part of me that just wished for something definitive. Absolutely not the "Simon has significant hearing loss". Absolutely not. He has a brilliant opera career ahead of him (right now as a Soprano which means he could do duets with his PopPop Bernie).

But something definitive meant there was something to do other than wait. Waiting is hard. Waiting for more tests, waiting for his heart function to improve, waiting for his immune system to get stronger, waiting for more words so that we can really begin to understand what his days are like, waiting for him to take food in by mouth (for obvious reasons coming from two foodies like his mommies), waiting for him to start walking, and now waiting for more months to see if there is in fact hearing loss.

Something definitive meant something to do. Either, check it off and realize that Simon is just a willful little rascal that has no interest in low flying planes or that there's damage that wouldn't be reasonably unexpected given the medications that he got during his two bacterial infections in the hospital. And then what comes after....relax or figure out a plan for him to live and thrive. I do that. I can do that. I can do either the former or the latter really well actually.

Instead we wait. We go swimming. We celebrate little/big things (like first steps), and we love him up as best we can. The last one we can do so well and so easily. Let us not forget who we're talking about here.

"Uhhh, you better not. I am FABULOUS!!"

"I have my hair done regularly so I can keep looking good...for you"

"Plus I am always looking for the newest headwear in the fashion world. Just to be FABULOUS for you and make you love me!"

And it is easy.

One small step for mankind...

Or at least one baby!

Simon took his first step today. Completely on his own.

He was standing at the Coffee table in our living room and I was sitting next to him just far enough away that he couldn't reach me without letting go. I didn't realize at the time so I almost missed it but then it happened. There he was with one hand on the coffee table and the other one reaching for my shoulder when...he let go...both hands in the air....and he took a step!

I think I scared the crap out of him by yelling and telling Jaime (who was in the other room) "Some one just took their FIRST STEP!!" But there I was for just a moment (a sweet moment for sure) feeling like a regular parent thrilled over her child's first step.

Then he barfed on me (not related to the walking) and the moment was gone. Not gone completely since about an hour later he walked pushing a stroller for longer than I'd ever seen.

Today I feel like I'm having parallel moments run alongside each other. We have our hearing evaluation tomorrow and are waiting to hear back from the LEAP Program (an early intervention play group time that we may qualify for) and at the same time feeling the thrill of Simon finding his feet and clearly heading towards walking.

He's such a trickster. Since birth, he's brought Jaime and I just to the edge, and then offers some kind of reprieve and/or magnificent gift. Like sleeping five hours in a row just when we thought we might lose our minds from sleep deprivation, etc etc..

So just before turning 18 months, which is the later end of the 'normal range' for walking, Simon seems to be 'off and running'.

He is on his own timeline. I just need to keep remembering that. Simon.....in his own time.

Trickster/ Teacher it's all the same it seems.

Simon is not your typical baby. No baby is typical I know, but Simon has brought some very special times along with him into this life. He's certainly taught those around him to savour each moment and whether it's as a-typical as getting off a ventilator OR as typical as watching him take his first unassisted step, I celebrate this little life.

I celebrate you Simon Lev.

Celebrate Good Times C'mon!!

Training with G'Pa??