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??

Update

I don't even know where to start.

Simon is getting his hearing checked on Tuesday to rule out what seems like likely hearing loss.
Could have been since birth (it was never checked) and/or may be a result of some of the hardcore anti-biotics he was given during his two infections in the hospital.

It would explain some of his delay in talking and responding to specific sounds.

Really?!!

C'mon.

Still on the track...just waaaay back

Simon had his 6 month check up with the Regional Center yesterday. That's the organization that's been providing us with Feeding Therapy. We were checking in on that but also doing a general evaluation to see where Simon was at developmentally in all the other areas. Both Jaime and I had been preparing ourselves for what seemed obvious (especially obvious when we are with other children). Simon is delayed. We know that.

We just had it confirmed in an official way and it sucks.

This evaluation was a general one that comes from asking questions from a form but it looks at the larger areas of development to assess whether further more specialized evaluation is needed. We looked at Gross Motor, Fine Motor, Problem Solving, Eating, and Social Skills. On at least three (Eating, Problem Solving, and Gross Motor) Simon is delayed and on two of those (eating and Problem Solving) he pretty much scored a Zero.

********************

It's been a week and I'm sorry I haven't written but suffice to say that the above put me in a funk for a few days. I just wonder if it's more of a timeline thing with Simon and he's just moving at his own pace, moving being the key word.

Or, are we dealing with some deficiencies that are less about Simon just getting 'there' a little slower and more about not getting there at all.

More to come in that regard.

As for the rest of the week and into the New Year (Rosh Hashanah was last weekend) we are looking forward to much sweetness this year and hoping to continue on our no-major-drama path. We continue on with swimming, playing in sand, scooting, cruising, and making new monkey sounds.

It's a hard road for sure with some incredible vistas, gentle ups, downs, and a pretty long stretch of level trail right now.

October brings our Cardiology visit after two months of CoQ 10 and Homeopathy. I will not get my hopes up for big change.

Maybe just a little.

Some recent pics for you to enjoy

Mama and Nanook of the North

"I love you for sleeping"

"I'm going to be a blues man for sure. Lord knows I have some blues to sing about"

Chooo Chooooooo

Laura and I just had a chat after a very full day and I came up with yet another analogy about what it's like to parent a kid with a life-threatening illness.

A friend and I threw a baby shower for another friend who is due in late October. It was very fun for me AND it was also very hard for Laura to have me spending so much time cooking, going early to prep at the location, etc. Laura was clearly very sad and having a hard time at the beginning and I knew it wasn't just that we'd been grinding gears but I wasn't sure what was up. Tonight she explained that she was struggling with her memories of us at *our* incredibly joyful baby shower. We were so full of hope and joy and expectations. She said, "If I could tell those expectant parents (us) what I know now...I would have told them to just get rid of those ideas and hopes and dreams they have about a typical new parent experience". Looking back it's part cynicism and part sadness for those parents (us).

At the party, a woman with a 9-week old baby was talking to my expectant friends about how babies are so incredible because they are just pure emotion- they look at you so completely joyful and then the next moment are screaming their heads off. It was the "looking at you with such joy and contentment" comment that got me.

I felt such a deep, deep pang of sadness that I almost teared up. My memories of Simon's first 4 months are of a very grumpy, irritated, rarely content little baby that never stayed happy for very long. I don't have memories of him looking at us contentedly, peaceful and snuggled up happy and awake. I remember him as either asleep or just not very happy. We, of course, now know that he was probably very uncomfortable most of the time due to his undiagnosed heart failure and that makes me so sad. We didn't get to have the progression from grumpy newborn to gradually happier and happier baby in the same way other people did. Ours stayed grumpy longer and then KA-BAM we got derailed.

Here's the analogy: It's like we are now on another train from all our friends and most other parents. We might be riding right next to them, on two separate tracks, waving and smiling and chatting through our window, but we have a different journey. Our car goes through really scary dark tunnels with sharp, unexpected drops. We have bumps and screeches and rocking that our friends don't have. And the poor souls that might actually be riding in the same car with us terrify me.

I almost can't handle the idea of getting close to parents with other kids who have life threatening illnesses because their tragedies feel like too much when we're just holding on by our fingernails. Sometimes I can't stand to read the listserv of other parents with kids like Simon because it feels like if they go off the rails, our car might be the next one to fall off the tracks with them. It's all so precarious.

I was just really feeling the loss of the relatively carefree mindset I had setting out on this journey. It's not just worrying about funny poops or sniffles. It's rat poison and feeding pumps. I don't wonder if Simon is going to learn things as fast as his peers. I wonder if he's going to learn things at all. It was such a mix to be so excited for our friends and at the same time try not to hold my breath, cross my fingers and pray with everything I have, that they will never, ever know the pain and sadness and loss that we feel as parents of a baby with special needs.

Laura says plainly, "I'm jealous". Our friends will more than likely get to have that typical new parent experience that we will never get to have. And we will never get that back. Even if we ever had another kid, which is highly unlikely, we are forever changed. I've lost my innocence around what it means to be a parent. I will never parent without worry. I can try every day to keep it manageable but I also know it's that little bit of extra worry that makes us vigilant enough to do what is needed to keep Simon stable.

Sometimes I feel really sad for what we lost and are still losing. And lonely. We can be part of the party going on in the train on the track next to us, but at any moment we might end up getting derailed again or lose steam and slow down and then we're all by ourselves again, watching while everyone passes us by.

W.A.S.P.'s and Latkes

Jaime and I are special. We come from opposite sides of the country, with two very different families, (that get along swimmingly) with two very distinct growing up stories. Food, schooling, family time, recreation, religion/ spirituality, earthly goods, communication etc, etc.....verrrrry different. With all that going on, we still met and decided to partner with each other for the rest of our lives, not to mention embark on raising a child. Plus, we like each other a whole hell of a lot.

Here we are, just starting out on that crazy ride called parenting, when *whamo*! We have a kidlett that is quite special and brings with him into this life a whole host of needs that are not typical of the madness that is first time parenting to begin with.

For the last week or so Jaime and I have been bumping up against each other in this thing called parenting. I would say that normally we turn like cogs intertwined. Maybe cog is not the right word but I'm talking about the big wheels in clocks that have all the grooves and rotate, making the clock tell it's time...got the image?

Actually I would say that for the last week or so we haven't been "bumping" against each other so much as we've been rubbing irritatingly and/or feeling miles apart. Not so easy and/or comfortable when there's always so much at stake each moment of each day. Also, not so much fun when the underlying feeling is that you love the other person so much and miss them terribly even when you don't want to be around them.

.....Still with me?

So it had gone on long enough and we set aside our regular vegging out (Top Chef and Project Runway are back on- blessed be) to have some reconnection time. It's a conversation that we've had numerous times in the last 16+ months. How different our lives our as a couple, how different my life is from hers, how normal her life feels at times, how my life doesn't resemble any kind of normal that I've ever known....and on and on.

We were talking about how different our coping skills are given our backgrounds.

Jaime said something like "You know it's kind of like when someone dies. As a W.A.S.P. you put on a brave face, have a funeral and then get on with life sort of like it didn't happen."

To which I countered with "We tear our clothes and shut down for 7 days."

She said "We smile and cross our fingers that it doesn't come up in conversation because we might cry in public, which one really shouldn't do because it might make people uncomfortable."

I said "we cover the mirrors in our house, make sure to wear black so everyone knows and say the Mourner's Kaddish (prayer) for a year."

We went on with a few more examples. So much fun.

This was actually the breakthrough moment of our conversation and made us both smile and laugh.

Jaime and I will continue to bump up against each other, cogs screeching and scraping, but more often than not nicely in sync. We are both in love with our son Simon. We are in love with each other. Neither one is in question, both are absolute.

And Holy Heck, both are magnificently hard sometimes and in such different ways. Parenting is hard. Parenting Simon is hard. It's not the loving him part that's hard- that's easy. Even when he hasn't napped in days (napped yesterday!!!) or when I'm holding him down for a blood draw, scheduling his appts, cleaning up vomit etc, etc, my heart is still so full of love for him. Sometimes it's that heavy thick-with-sorrow kind of love but mostly it's the juicy-like-a-Jolly-Rancher-candy kind of love.

Loving Jaime has also been so easy. Even when we are scraping along I am so aware of how much I miss the sweetness and want to get back to it. It means that I always carry an apology in my pocket. I might forget which pocket it's in right away or it might be the "I'm really sorry that was hard for you" kind of apology, but it's there.

I think Jaime and I genuinely do feel bad when the other person is having a hard time even when their hard time might be facilitating ours as well. The magic trick we are working on is letting the other person have their hard time, being there for them, and remembering that how it gets played out is not necessarily about us, even though it's coming our way.

Simon requires a whole lot from us, emotionally, physically, financially, spiritually,

you-name-it-lly and that includes Jaime and I loving each other and working together as best we can. He deserves it. I deserve it. Jaime deserves it.

Mayo and Matzah.

WASP's and Latkes

Christmas Trees and Maimonides.

It's all good

and hard

and my family.

Like Justin says "I'm lovin' it."

Here are some pics of the growing boy

I got new shades!!

I like em'!!!!

I look gooood!

Story time with Julian (1 month apart but look at those different sized heads!)

Simon's new favorite pastime- Zerberting Mommy

Terrible Horrible No Good Very Bad Day(s)

Having a sinus infection does not help.


It's been one of those days (actually we're on day three of one of those days).


Simon has not napped in three days (with a nap on Sunday but then not for three days before that either). I have no idea what's going on for him but it's making me a little nuts that I get no real break during the day (save for the Pious One Abby Pike who can sometimes take Simon and run away from the 'about to lose her shit' Mommy monster). Add on to it a very pukey baby today, morning plans foiled, clothes changes three times before noon, one extra shower (that immediately went to waste) one Dr's visit for Laura, and the ever annoying/sometimes painful sinus infection and we've had a terrible no good very very very bad day. Oh yeah, and Simon has Cardiomyopathy so even when someone wants to come and babysit (thank you for the offer Nola) it's not really an option unless they've been trained in the pump and feeding regiment not to mention the medications. That doesn't even include the extra worrying that his barfing brings on. Are we going back to the ER for IV fluids? Are we going back the ER for something more serious? Why isn't he keeping his food down? Teething? Heart? Other system starting to fail?


I had a good cry right after he barfed on me for the third time in 10 minutes and was clearly not going to take a nap today. then we got a call from our caseworker at the regional Center, the place that provides our OT for us (free of charge). Looks like Arnold has cut their budget significantly so we won't be receiving services from them any more since Simon does in fact have insurance. That just means another co-pay for weekly OT plus he's likely to qualify for physical therapy as well as speech therapy. Three more co-pays AND with our new insurance, med costs almost doubled. I hate this. I hate it.


At least there's an air conditioner now running in our home keeping it cool during these hot hot days (thank you G'paw!!) and we're off to swimming with our dear friends Skeeter and little Moses.

It also helped a little that Chocolate Lucky Charms were on sale at the Drug store where we had to pick up my prescription. It's the little things right?


Somethings gotta change soon. We need to get back to a schedule that includes a nap. What 17 month old baby (with a heart condition) doesn't take a frikkin' nap during the day?! I'd like that back please. Oh yeah, and I'd like Simon to eat. That would be really really nice. And walk. If he started walking too that would be awesome. While we're at it why not just make his heart stronger too. That would be super special. How 'bout it?


Right.


Ok then.


I'm out.

Joni Mitchell Had It Right

Feeling very Blue this morning. I capitalize it because it's feeling very much like a place, a state that's just next door to where I live. We're right on the border and sometimes it feels like the fog from over there spreads and covers my house.

I think about Simon and how he's doing and just want so much more for him. Isn't that a parents place though? To always want more for your child? I want the best for him of course. It's just that the 'more' I want right now for him is what most new parents are getting without even thinking of it.

I'm watching him play by himself right now and while he seems as content and engaged as can be, I feel this missing element...the 'other' that Simon gets so little of.

We watch a video of this singing group for little ones (and big ones too for sure) and I see how fascinated he is with the images of so many different babies, toddlers and children. They are singing, and toddling around and he just smiles through the whole thing. It was like that sing-along that we went to at the library.....and can't go back to. I can see him when we're out walking just watching other children. I want more of that for him. I want him to have playmates that he can do parallel play with occasionally learning about sharing and taking turns and having things grabbed out of his hands and doing the same to other kids and then learning from it. He gets so little of that let alone time with other kids in general.

I keep thinking "he could handle it right?" going back and forth between "sure he could, look at him" and "riiiight, it's not how he looks but how his heart is functioning" and then "but he's gotten two colds now and it hasn't affected his heart" to "but what if the next one is more serious and/or the flu". And that last ones helps me remember that it's not worth it and I'm back to where i started, wanting more for Simon. Just wanting it and not being able to make it happen.

I have great gratitude for swimming twice a week and it's not enough....I think...I don't know. Being a new mom is hard enough.

I just feel it this morning. The weight of it all. Eight medications, enteral feedings, OT, a compromised immune system, heart failure, vomiting, sweating, mistakes that aren't life threatening but not healing, colds, ER visits, desperately not wanting to go back to the hospital but knowing that it's always on the table, isolation, managing on one income, and all of those other things that I can't think of right now because we are getting ready to head out the door.

Lots of sighing this morning.

Here are some pics from yesterday's visit to the Zoo with Simon's Vitzvah Carol (aka ICU nurse and special love bunny). See Laura, you do get out.

Um...Mom? Do you think this is a good idea?? Look at her eyes!

Hey this is so much better than a spinal tap!! I like hangin' with Carol now.

Ooooh Monkeys!!

Can I have a Lemur Carol? Can I?

Lemur Shmeemur. Can I have a Giraffe instead?

Switcharoonie

Normally our medical visits are categorized as f0llows:

Cardiology visits- the least fun. They almost always include a blood draw and usually take upwards of two+ hours

Pediatrician visits- mostly fine and even vaccinations and extra flu shots are over fast.

GI visits- No biggie except for the height measuring which Simon does not like (due to the need to be lain down on his back)

So when our cardiology visit this past Tuesday went so smoothly (minus the very short freak-out during his Echo) I was thinking that the rest of the week would be cake.

Not so, not so.

It started with me, Laura, waking up Thursday morning with what hinted at a sore throat. Simon seemed fine. So in our special co-dependent way all seemed fine until we hit the pediatricians office.

Simon was chillin', checking out the fish tank and a nurse that I've never seen before hands me a "development survey". First off it's the wrong month (she handed me the 18month old child survey) and second.....where do I start......

Simon spent 4 months in the ICU. He is amazing and incredible and surviving and thriving despite being in heart failure, vomiting several times a day, having a tube sticking out of his tummy, and taking 6 different medications that each come with a long list of possible side effects. Really, he's rockin' it given all that.

And, it hurts my heart when I'm checking off that fucking list and almost every answer out of a possible 'yes' 'Sometimes' or "not Yet' is a 'Not Yet'.
Not yet
Not yet
Not yet

He's behind in every category. I think I had maybe one or two Yes's out of the whole dang thing. I know it makes sense and really he is a miracle child AND I gotta tell you, it sucks to have it come at you all at once that your child, that most precious little ball of life, that you are working so tirelessly at not just keeping alive but teaching to savor and delight in each moment (as you are trying to do as well), that this child is not quite where he's "supposed to be".

I know that given everything that Simon has been through, he is just where he is. It would be extra ordinary and most unlikely for him to be just like all the other kids his age. And I know that every child is unique and different.

Still, we as a culture have created these 'ranges' and when you fall outside of them, there are a whole host of other things that can come into play. Simon is outside the range. It's often a lonely and hard place to be...for both of us. *Cue rolling tumble weed and a melancholy cowboy song*

And I know that almost every second of every day. I don't have to focus on it since there are so many other things to focus on moment to moment. So, when it's all lain in front of me in a matter of minutes, sitting neatly on two pages (double sided), on a clip board in a doctor's office, on a day when I'm starting to feel the tingles of a cold coming on, moments before I have to hold my son while he gets his vaccinations (extra ones for him with the coming flu season), it's not a happy moment.

*************************************************

It's now Sunday and I'm going to finish this.

Simon and I are both starting to feel better. We're no where near over this cold, Simon managing it so much better than I am, but at least we'll start the week on an upswing.

Jaime has been a saint all weekend and Abby is going up for Sainthood as well.

Simon is just perfect, three words and still crawling, he is right where he should be. Here's to a gentle week ahead of us.

Such a punim on this kid right?!!

punim=face in yiddish