All's well

All appears to be well in the Fitch-Jenett household.  Laura is off at a tattoo appointment, the baby is sleeping and I've been wreaking havoc in the kitchen.  

This past week was a little dramatic but it was all run-of-the-mill, normal life stuff and it just felt like nothing.  Monday I fell on our walkway while holding Simon.  He slept through the whole thing and I didn't get hurt, just a little sore.  Tuesday morning we had a weird, homophobic incident while getting coffee all together before I went to work. Then Wednesday morning while I was driving to work, I hit a sinkhole on the interstate, blew out my tire and had to cross 5 lanes of rush hour traffic to get to the shoulder.  

They all definitely rattled my nerves, but, honestly, it barely made a mark on my week, other than giving me good water cooler stories at work. I'm not sure if it's a perspective borne of experiencing true terror and drama, or if it's how I'd handle things  5 years ago, but it was nice not to have my week ruined by icky things. 

I was thinking about marriage the other day and came up with a somewhat horrible, but kind of good analogy.  I told Laura I thought being married was a little like being in a boxing ring.  You're in a contained space, with clear boundaries, but the edges are flexible and you can push on them and push off them and work your stuff out in there, knowing that you're going to stay in the ring.  If you take out the violent boxing stuff, it kind of works, right?  We decided to change it to a WWF wrestling ring and then Laura suggested Cage Fighting.  We had a good giggle thinking about us working out typical married struggles with crazy costumes, masks and stage names.  I'm not sure what our names would be...any suggestions?

Simon has been walking like a maniac (albeit assisted).  He mostly prefers to walk now, holding a finger or one of his walkers.  He still sort of walks like Frankenstein, but he's starting to bend his knees and walk like a human a little more. 

Here are some recent pics:

Simon, walking with his newly Domestically Partnered Godmamas

Looking happy as can be:

Normal

I'm normal.

(or at least 'normal-ish' according to my dear old friend Maia).

But let me go back and begin chronologically.

It's Friday morning and I head into the Cardiac Unit at Alta Bates for my very first Echocardiogram or ECG as I'll be referring to it from now on.

It's not really my first ECG since I've been through several dozen with Simon but it's the first one performed on me.

I didn't realize it, but in the days leading up to it I was starting to feel like this was in fact a very big deal, and maybe I should be spending a little time with myself and my feelings to work it out.

Laura time-Introspection- Focus on Self/Care: All things I've been stellar at in the last year.

The middle one maybe, but the first and last, I say I get a D-

The amazing thing was that I had my Mommy with me. She even came into the room with me and chatted up the ECG tech. I can't tell you all how amazing it was to have my mom here for the last week. To have someone focus on me the way that I focus on Simon.....priceless. That she held me down the same way that I have to hold Simon down...I thought that was a little much....Just kidding.

What was so amazing was that I could actually see a difference right off the bat, with my untrained, non-medicalized eye. My valve moves differently that Simon's. Mine is more like one of those doors that you might see on a traditional Berkeley craftsmen house swinging wide, almost 90 degrees with every pump. Simon's is more like a hotel room door with the chain attached so you can see who's knocking. Not quite that bad but close.

It was very intense to see.

I also learned that my ejection fraction is 62 where Simon's is 45. Mine is right in the middle of the normal range of 55-70. The tech was impressed that his was 45 and I took that wholeheartedly as a wonderful objective observation from someone that's seen a lot of hearts.

So while I wasn't getting the official "your heart is fine" from my doc I was at least comforted that I wasn't showing any obvious signs of Cardiomyopathy.

Today I got that confirmation. A sweet typed letter from my doctor that lists all the possible tests results one can possibly have. There were spots for Anemia, white blood cell count, lipids, thyroid level, glucose, kidney, liver function, prostate cancer marker, and a couple of lines left blank for OTHER.

That's where in small handwritten unreadable doctor script, was my procedure- "Echo" - and my very own (and possible first time ever applied to me) personal results " : Normal"

That's me right? Riiiight.

Gotta love it.

Shortly after my Echo, we picked up my sister from the airport, mother and daughters shared a delish lunch from my favorite Vietnamese restaurant and by 4:00, Jen and I were on the road for my weekend away.

I have to say I think that I did a great job. I only called home 2x a day and I cried only once...which leads me to my next story.

It's Saturday morning. Jen and I have had a yummy breakfast at our lovely resort up in the Russian River area. I'm just starting to feel present and even looking forward to my massage that my sister has scheduled for us.

We walk into the room, meet our massage therapists, get changed/naked and lie down on the tables. Immediately I feel my chest tighten and the tears start.

Who am I to be here and getting a massage? Why do I deserve to be here and be sooo taken care of? My son is at home with heart failure and tube feedings and I'm getting a massage?! This is too much.

We introduce ourselves and mention where we are each from. Jen from L.A. and me from Oakland.

I let my massage therapist know that it's my first time away from my 22 month old son.

(I'm going to write in conversation mode because I remember it word for word)

She says she understands because her oldest just "flew the coop."

Me: "Simon's a special boy, he's got a heart condition."

She: "Oh I'm sorry, I understand. My youngest has a serious chronic illness"

I might cry" I say, already there

Jen: "It's ok Laura, just be here."

Me: Deep breath, some good sobbing, and we get started.

Less than 10 seconds later she says "Do you go to Oakland Children's Hospital?"

"Yup," I say already wondering where this is going.

She: "We went there a couple of times..oh, we had the most good looking Dr. What was his name? We used to call him Dr Easy-on-the-eyes. What was his name?"

Me: "You're not talking about Dr. Rosenfeld are you?"

She: "Yes! That's him!"

Me: "Oh my fucking god. That's Simon's Cardiologist. We call him Dr. HunkyPants."

We went on to talk about him and how soap opera good looking he is (see August 6th 2008 entry) and then talked about our kids and the whole 'parenting plus' experience. It was amazing. Here I was, on my weekend away, at a mostly empty resort in Guerneville CA, and my massage therapist and I have the same pediatric cardiologist for our kids and not only that, we have very similar nicknames for him.

It was just perfect. It was just what I needed to relax and get one of the best massages of my life. I didn't have to pretend anything. I didn't have to tamp any parts of myself down. I didn't have to feel alone in that moment. (I know my sister and another massage therapist were in the room but still...). It was amazing. Jen said it was amazing how surrounded by Angels I am and it's true. There are incredible gifts to be found everywhere. Thank you Krissi.

We ended up having a fabulous rest of the weekend complete with a bad movie, a great walk in the redwoods, fun outlet mall shopping, and splendid sweet sweet time with my sister (with whom I haven't had that much time alone with in ten years- Thank you Fenny Jitch)

It was great to have had such delightful weekend because Monday was one of Simon's Cardiology visits and I was not looking forward to this one as it included his dreaded Echo plus the ever enjoyable blood draw. No matter how much I try and normalize the visit, the days leading up to it I feel my muscles tighten and the weight of everything settle deep into my core.

Will this be the one? Will it be the one where there's big change? Will his heart have gotten better? Will it have gotten worse? Will his tests come back with some anomaly or some cause for great concern? It's been so long since his last visit, what if something has changed and it's serious? Would they admit us right away even though he doesn't seem that different? Has he gained any weight? How much? Is it too little? What's his left ventricle looking like?

And on and on. I can't help it. It's a three to four hour event and it carries with it such weight, not to mention the holding down of my son accompanied by the screaming that is inevitable (for at least another several years with the blood draws- they say with the 'no owie' Echo, getting to three is the magical number).

We managed to get through the Echo with just a hair less struggle. I frikkin' love the Teletubbies and portable DVD players, and then we headed into the exam room to wait for Dr Easy-on-the-eyes.................I mean HunkyPants.................I mean Rosenfeld.

Three things. One neutral (or relatively positive), one delightful, and one terrifying and great all at the same time.

One Neutral- There is no change in his function (Shortening Fraction 20 Ejection Fraction 45)which I guess is better than the other option. I still always hold out for that big jump but we're 6 months now with no change. I wonder if Simon's plateaued. I'll keep holding out for the jumping.

One Delightful- Rosenfeld said that he didn’t need a blood draw this visit unless of course I wanted to know the BNP. It took me about one one hundredth of a second to say no thank you- sorry Liz.

And last but certainly not least

One Terrifying and Amazing- We are now extending our visits from every two months to every three months.

This is both amazing and frightening right?

I’m so very glad to have the longer break between Echo’s, blood draws, and the long-ass appointments that seem to fill up the entire day. I can trust that Rosenfeld knows how well Simon is doing in ways that I don’t, and of course it’s terrifying to think that Simon’s going to go three months without an echo or seeing a cardiologically trained individual (besides myself that is- I think I made up a new word there J).

I remember when we went from 1 week appointments to 2 week appointments and I thought I would faint.

Of course as we were arriving for our appointment I heard HunkyPants say goodbye to another one of his patients with a “See you in a year” and I thought “Gosh, someday I hope that’s us”

Such a roller coaster ride.

Sometimes I feel like I’m riding in the first car, other times the middle, and occasionally the rear.

In that first car I can sometimes see what’s coming and it’s exciting (Getting those better #’s, clear improvements, discharge days, finally hitting some milestones, Simon's laughter).

In the middle car I’m keepin’ on to keep on. (Making sure the meds are reordered on time, keeping appointments straight, doing regular daily activities, tube feedings, meds, Purell).

And then there’s that last car where the ride just feels more intense. Every whip turn, every drop, the very slow climbs, feeling like the floor just fell out from underneath you and you can’t catch your breath.

We haven’t been in that last car for a while now and I’m so grateful. Of course I always feel like I’m aware that last car is still there and attached.

Quite a ride.

All in all a good visit.

We're getting back into a regular schedule with swimming and schooling and walking. Did I not mention that the little man is WALKING!! That's right. Mostly with his crocodile walker (for oh...an entire city block) but we're seeing more and more solo steppin'. Twice now he's walked from our front door up to the front lawn holding my two (sometimes just one) hand.

Go Little Man Go!

Some photos from Auntie Joan's B-day dinner.

Simon enjoying drinks at Auntie Joan's B-day Dinner

"What do you mean I'm cut off? What kind of joint is this?"

"Wait, I'm serious. Really, I'd like another drink. I'll behave."

"It's ok. It was just water. Now can I have another drink?"

All about me

Simon's fine. Doing great. Looking good (see last entry). Stable as a table.



Mommy's working some shit out.



I'm going away for the weekend with my sister. Just me and my sister. No Simon. Trippy. That's a lot to be thinking and preparing for right?

Naaahh, let's add on an Echo Cardiogram on Friday morning just for fun. No, not for Simon. His regular appointment is coming up on the 8th. No, this one's for me.



I'm fine (I think). This is the Echo that was reccomended by Simon's Cardiologist research studies that show that cardiomyopathy can sometimes be genetic.

----------------------------Wrote a lot more, lost it, done for the night.
Tomorrow
1) Echo for me
2) My mom leaves after a week of being here (so fabulous- no words- huge love)
3) I leave for the weekend- first time away from Simon

Think good thoughts please.

Very Happy Boy

He's adorable and one of the most joyful little one's I've ever met. I know I'm biased but still...

Swimming with Mommy

Ride that Duck!!
Looking good in my bathing suit
Hey Mom, Check this out! (see next pic)
I can communicate through my eyebrows

Real Quick

Tuesday:

8:00 Wake up (after a full nights sleep)

9:30 At school tearing it up

12:30 Home

1:15 Asleep (blessed be)
..........................Until 5:00................WHAT?!?!

8:00 Bedtime

10:00 Actual time quieting down

3:30am Kind of awake and talking

5:30am Raring to go- Ridiculously happy


I don't understand.

Naps are for Babies

And apparently Simon is not a baby.

He's on some kind of developmental tear and for the last three days has forgone naps. Granted, he's also back to sleeping nights after working out a wicked cold (again, he handled it much better than I did) but holy heck, he's been stupid cute and clearly getting ready to do big things.

We've got new words and new sign language down. He's very clear telling us when he wants more of something and just recently started doing the sign for 'yes' when we ask him whether he wants something or not.

I haven't seen it yet firsthand but I'm imagining it's a little like the fist pump from the MTV show the Jersey shore only just in a slightly different position and with a lot less hair gel involved (although tonight's yogurt did go right into the hair so.....)

As much as I thought I might fall down from exhaustion by 8pm, I also thought I might fall down from laughter.

He's working his eyebrows in new ways. He's making new sounds and mimicking words and sentences. He's pushing his crocodile walker from one end of the room to the other, pivoting, and heading back again. He's pushing limits and testing boundaries (oh lordy).

In general, he's just being an amazing baby......sorry...little boy.

The back pain, the sinus pressure, the sleeplessness, it's all transient.

My relationship to this little wonder, forever.

MM arrives this Friday!! (so does smoked mozzarella from Arthur Avenue in the Bronx!! I'm thinking that since Simon is biologically related to me that there's a really good chance he's going to want to inhale this like I do.)

Today at PIP.....

Simon and Winona at school

Stunning in light blue

Thinking is hard work- looking good doing it though

Simon getting way into music time

Out of my own groove and back to playing with the band

Follow Up

We are 4 days post surgery (minor really but I'm told it still counts as surgery) and sadly I'm still feeling it. Surgery went smoothly (just a flushed face and runny right nostril from the anesthesia). Word around town is that it could take up to 2 weeks for the steroids to kick in and or it didn't take.

Poo

Roxie's eye isn't any worse, which is a good thing but we might be looking at several months of healing. She is standing in the middle of the room right now whining. Immobilized by the Elizabethan collar that she has to wear.

Simon is a little more barfy these last two days since we switched over to the blenderized whole food diet but so far we've only had one tube blockage incident and we're working on it. The new blender seems to have just a few kinks that we need to figure out but I will say that it makes a nice smoothie.

The rain is pouring down right now and we're home bound. No school today because of a sniffly baby. Anybody wanna come over?

Things feel particularly rough right now. Not necessarily 'hard' per say but for sure not very smooth.

There's a lot going on.

I treasure my history of amazing communication with Jaime. I treasure our foundation. I treasure those moments of sweetness in between giving Simon feedings and/or Roxie medications.

I give thanks for Simon's joy in just about every moment, especially snuggle and wrestle time on the bed. I give thanks for good genes and making him so easy on the eyes. I give thanks for the Telletubbies. I have immense gratitude for friends and family support. Bless the YMCA and BOB strollers. I love baby sign language (Simon just recently has been showing us 'more' and 'yes'). A huge shout out to the Grand Ave/ Lakeshore neighborhood and to our landlord for continuing to house us ;-)

and on and on and on.

The gratefulness is all right there. I feel it all the time.

AND

Sometimes I don't know how this can go on. (I know it just does but I'm not there right now).

How do families with children with special needs do it? How do you keep on keepin' on when there's already so much to think about without that extra "special" something? And when there is...well how do you maintain?

When will I get back to being more than just Simon's Mommy and caretaker? When will I feel the room again in my heart and head for things other than Simon, and his care and growth? I know parents do it. My mom finished a PhD before I hit double digits. I know it can be done. I even know other parents of kids with extra 'specialness' that do it. Somehow they have the room for part time work or training for a half marathon. It feels like I have neither room or interest.

I'm not saying that I want to go back to work right now but I'm just wondering at what point will I be able to say "yeah, I was a stay at home mom for * years"? More than that though I wonder when I'll feel like I really want to carry on that conversation about a current event or that I even know and/or have interest in those things. I'm definitely not feeling it right now.

So, I'm sorry if you're the one that watches me glaze over as you bring up the latest news or important issue. Not sure why but I don't have room for it right now. Sometimes I start to feel sad or even teary about the loss and then....yup, no real energy for that either.

This is frikkin' hard.

I love Simon so much. We just had a sweet sweet drift into nap time together. He plays with my hands now as he's falling asleep, rubbing the underside of his knuckles over the tops of my hands. It's really almost enough. So then what's the "almost" about? I'm not clear and not feeling like there's anything to do about it.

How much of that is where I'm at or who I am is also another question.

A really good one.

It doesn't help that my back is not completely better and I may just be living with pain for a long time.

Jaime and I were talking the other day and I couldn't help but feel those (stupid and irrational but present) feelings of failure.

Here they are:

I don't have that much to do every day and I can't even do those simple things like lift my child into his car seat.

I couldn't keep him interested in eating after he was so into it while on steroids.

He won't walk. He can, he clearly just doesn't feel confident enough to do it. I'm not instilling in him confidence.

He won't say Mommy. He won't call me by name, any name at this point would be nice.

I can't figure out how to make my back stop hurting.

I can't make myself better and I can't make him better.

I'm failing (just let me get it out, it's good for me). I'm failing at taking care of myself and I'm failing at taking care of my son.

He's not talking, not walking, and not there where most other children his age are in almost everything, where ever 'there' is. I can't start potty training because we don't have enough words down. I worry about his teeth and jaw muscles not developing because he doesn't eat and it's been months and months of working on it. He's so self sufficient that he won't figure out how to call for either his Mommy or Mama by name. I don't even know what to do with myself when I do get some respite care (respite care?! Who am I to deserve respite care?! Are things REALLY that hard?) and I'm gaining weight because I can't figure out how work in some really good exercise time for myself AND get my back strong enough to keep lifting my 25lbs non walking non talking baby that has a heart condition.

If I say the above paragraph fast enough then by the time I get to "heart condition" I'm hearing how ridiculous it all sounds. As true as certain things might be, the feelings of failure or 'should-ing' on myself are just ridiculous. And they're there.

I don't think that chronic pain helps with any of this.

Who's feeling super sorry for themselves right now?

Who? Who? Who? (sung to the tune of ho let the dogs out?)

Me.

At least enjoy some photos and witty captions.

Simon loves it when Mama can swim on Mondays

This is the new look for 2010- Boots and a Sweatshirt

Check out those legs!

Simon's got Mamaw right where he wants her

So much so he thinks he'll join her

Epidural Bound

I had a home birth. 7 hours and 16 minutes. 30 minutes of pushing total.

I'm having an epidural tomorrow along with a shot of steroids.

Weird.

Turns out I have a herniated disk in my lower spine.
Awesome.

I am relieved somewhat by having a clear course of action to take that should alleviate the pain and let me at least let me get back to a place where I can begin to take care of el backo. I am not relieved to have learned that I already have some minor arthritis in my spine that while it can be worked on to not increase, cannot be reversed.

C'mon.

At least Simon likes the 'dead bug' exercise that I have to do three sets of 30 of every day. He thinks it's funny to push down on my legs as I lie on my back and slowly bring my legs up and down like a New York cockroach. Dr Jess was very happy to hear that not only was Simon giving me the space to do my exercises but providing additional resistance as well.

Simon Fitch-Jenett, my own personal trainer.

I'm hoping for a nice beach/ocean/underwater daydream during the anesthesia. Maybe even a redheaded mermaid that shows up with fresh baked yumminess.............oh wait, I have that at home -Jaime's been on a fresh baked bread kick lately :-)

Truth is, this has been a hard kick in the pants for us to look again at our infrastructure and see how we as a family can handle additional stressors.
Lots and lots of good hard lessons here.

And we have to do some restructuring. Spread the love as the case may be.

I carry a lot during the week.

Jaime carries a lot during the week.

Simon demands a lot.

Add anything to that lot and the strain multiplies exponentially. I in particular really need to work on sharing the wealth. And most of it is 'rich'.
It's time with Simon and that's worth a lot right??

I also have to work on really believing that. I admit there is a part of me that struggles with teaching people about how to take care of him.
The funny thing is I don't think of it as a burden for me but there is a huge part of me that resists training people on his tube feedings and medications in part because I don't want to burden other folk.
How messed up is that? These are people that love Simon, that love me, that have been so supportive of the three of us.

Yes, there's the part of me that is scared that it won't be done right, or something will go wrong. That's real. It's not simple and there are several steps and lots to remember AND I have a cell phone. I'm not really going to even be that far AND Simon will not die or really even be in any sort of trouble if he misses a feed or a medication is given an hour late.

It's all ok right? (not sure who I'm asking but it still feels like a question and something I am in process about believing).

I think every new parent feels this way at some point.
That first time you leave your newborn to go out for a meal.
That first chunk of hours where you leave them with a babysitter.
The first playdate where you don't really know the other family like you know your own family.
That first overnight.

It's just a little bit extra over here and I'm working on it.

I'm excited to have the 'roid' experience along side of Simon (even though his have long worn off). Isn't there some kind of saying about a family that "juices" together stays together? No? Oh well, there should be.

I am a camel

I don't need a lot of water (I know I do but i rarely feel it). I move kind of slow (they are not known as speedy animals), and I thoroughly enjoy a good spit (they are known for their spitting).

And normally I love straw. I like lying on it. I like the smell of it. I even liked collecting it during hot summers in Vermont when I was younger (it was back breaking work but felt so satisfying at the end of the day).

That said, I believe I am officially of the broken back because of one last straw.

Literally.

I can not get my back to settle down. It's been in constant pain and spasm and for the last 4 weeks there have been moments of little pain surrounded by longer stretches of lots of pain.

Simon seems to be finally over his cold and cough while I am still hacking some but at least without nighttime congestion. That does mean though that we are back to some vomiting and not really eating anymore.

Sigh...it was awesome while it lasted. Back to the slow road and regular tube feedings.

And, as of yesterday, Roxie our lovable dog with her own set of special needs, has an ulcerated cornea that requires 4 different medications and most likely a surgical procedure that could take up to 6-8 weeks to heal.

That means along with Simon's 7 meds, my 2 (three if you count ibuprofen that I have to take when I can't take the muscle relaxer or vicodin because I might have to drive) and Roxie's 4, we are working out 14 medications in this house.

I'm really just about cooked and not quite sure what to do about it.

Chronic pain is exhausting. Stay at home parenting is exhausting. a non-walking 25# baby is exhausting. Heart failure, tube feedings, and daily medications are exhausting.

It's even more troubling that I am so exhausted after a weekend in Calistoga surrounded by our peeps and hot mineral water.

The weekend was delightful and a wonderful celebration of Jaime and our community.

Jaime and Shimmy through the morning steam

Noodle Fight!!

Here's just a few of the crew- From L to R..... Eric, Simon, Mel, Julian, Tanner, Jaime, Laura, Karen, and Zuzu. Calistoga Spa & Hot Springs never knew what hit them.

More of the wrinkled but relaxed family.

Later that evening at Taylor's Refresher

The 'roid ravenousness might have worn off (as has the eating that we were seeing) but the little man is still willing to put things in his pie hole- in this case an onion ring dipped in ketchup.

That's a vegetable and fried food- two of the major food groups.... right??

Photos

If you missed it, read the last post first... Then the pictures will make more sense.

First day of vacation, walking to the beach.

A Boy, his dog, and the hole they've dug together

Naked time. Note the strategic draping of the towel (and the socks)

A boy and his Grandpa Eddie

Simon begins his love affair with pig





HOME

Simon continues his love affair with pig (in a different form)

Moving on to Gai Lan (Chinese Brocolli)

And completing his journey with (from left to right) a sesame ball, egg custard (on his face) and BBQ pork.

Then there was the late night snack of bread and soup topped off with yogurt and leftover sesame ball.

The boy was on a major tear

FYI this was all on one day!

'Roid Rage and Righteousness

I don't even know where to start.


2009 finished with a kick in the pants and 2010 started with steroids.


Let me explain.


On the eve of the holiday Christmas, Jaime, Simon and I head up to Gualala where Mamaw Dianne keeps a lovely cabin just east of Highway 1. It's right over the Mendocino county line and is, on a good day, a three hour drive from Oakland. Dianne, Ed, and Roxie's uncle-dog Barron are already waiting for us up there.


We leave just before 7 p.m. on a no-nap day and Simon is fast asleep in his car seat before we've cleared the Alameda county line. It's a simple drive up with Roxie whining for only a few minutes until her Dramamine sleep starts and Jaime and I enjoy some adult conversation until we arrive (less than!) three hours later.


A quiet night and the next morning we begin to settle in for the Silent Night. The tree is decorated with care. The dogs are run stoopid on the beach and Simon is happy as an abalone clam (they're prolific up there).


It's a lovely Christmas Holiday complete with roast beast, a successful attempt at Yorkshire pudding, and lovely simple present giving and receiving. Simon is doing well on a blenderized diet during the day and seems to have acclimated well to the ocean air and different sleeping arrangements.


On the third night, as we're settling down to sleep Simon begins to cough. It only happens once, a short fit of coughing that doesn't seem to bother him or even slow him from his slide into deep slumber.

But...it's a different kind of cough.


Jaime and I both noted that this was a cough that we hadn't heard before. It was deep and wet. Not so great.


The next day was fine and Simon seemed in fine spirits. We played, we went to the beach, we even had some fun with food.


That night the coughing returned only this time it was most of the night. Every two hours at least he would wake up and move between retching and this hacking cough. The next day he was pretty tired and incredibly snuggly all day. Another night of waking and retching and coughing and we were starting to talk about it. Mostly in the sense of how the nights were getting to be a total drag but how well he was managing during the days.


By Wednesday we were all feeling a little worse for wear but Simon was still having great days with what seemed like normal "I had a rough night" tiredness but lots and lots of other moments of "I'm having a great time".


Quick Aside:
When I say great time I mean great time.
The cabin has berber carpeting in the living room area and it's nice and soft and thick. There's also a wood burning stove that when it's running, gets things quite cozy.

The latter was starting to be a problem for Simon until we realized that this was the perfect time to just strip him down and let him roll and romp.

He loved it. he loved being naked and crawling around, getting up on the couch, standing at his musical table, etc etc. AND.....here it is... Simon found his penis!!!

I was starting to get worried given that we'd been hearing for months about his friends finding it and enjoying it (or in one case pulling on it and not making the connection to the point of crying "oooowwww, who's doing that?!).

I understood his avoidance given that he'd had his catheterized no less than 4 times in the hospital. Still, I was sad that there was no exploration down there.

Not true anymore.

He's quite enamored with it and now gets sad when we decide that naked time is over and put on a diaper. He's clearly confused why we've introduced him to this new plaything and keep putting several layers of material between him and it.

I felt like a normal parent. Yay for Simon's penis!!!

(I never ever thought that I'd put 'yay' and 'penis' in the same sentence- nothing personal to you's out there that have them. It's just been a very long distance kind of relationship for me and the penis)

Back to our story...

So we're now having a morning where Simon is clearly not having a good time. He can't stop coughing and crying and then we hear it.

There's a distinct wheeze in between coughs.

FUCK. A wheeze. It's there.

And my heart leaps backwards about 16 months and starts screaming "Go, GO, GOGOGOGOGOGO. Get to the Hospital!!!!!!"

I take a breath and remember that this is not that baby of 16 months ago and we have time and some calls to make.

The Cardiologist on call (love to Dr. Saba) is wonderfully calm and reminds me that it's most likely a chest cold and a simple bronchial dilator (like Albuterol) should take care of it.
We talk about whether to get to a clinic up here or if we should pack up and head home about 6 days early from our vacation.

Mind you, Simon and Albuterol are not a good match since one has a heart that likes to race and the other is a med that makes the heart race. Not a love-match.

After talking with an on-call advice nurse for the local clinic and an actual clinic nurse ("cardio what?" and "geez, sounds like your son has quite a bit going on"- the last one after I listed all of his medications) we decided to get him seen by someone that actually knows him.

Even the on-call Pediatrician from our practice back in Oakland (that I got on the phone next) suggested that he get our own Dr. Winokur on the phone so that we could talk to someone that really knows him.

Mind you, it's only 7:30 a.m. now and we've been up for about an hour. However, I will say that at this point time feels like it's crawling and I am a little nauseous thinking that we are at least three hours from Oakland and that's only from when we start the car and pull away from the cabin.

Dr. Winokur calls within ten minutes, comments on the beauty of the Mendocino coast and then gets the run down. I tell her we've talked to cardiology and that the assessment is that it's not cardiac and most likely Simon needs a bronchial dilator. I ask her if that's not a problem given his heart condition.

She replies that it's not a problem if it's monitored closely but is more concerned that it might be RSV (Respiratory Syncytial Virus) which could be a real problem for him.

This is followed by the statement "I wouldn't really go to anybody up there."

Done deal.

I think I was already pretty much there, especially with the "cardio my-what?" comment but this had me packing.

I will say that I don't have anything against small town medical clinics. I know there are wonderful Dr's and nurses and medical personnel that give stellar care.

Simon needs a little more.

I love Jaime.
Within 30 minutes we are packed and ready to go.

I love our friend Abby.
She stayed behind to finish up packing and cleaning the cabin and drove herself and Roxie home (Roxie was so freaked out, she managed to get herself out of the hatchback area and into the front seat and onto Abby's lap WHILE she was driving on Hwy1. Roxie is 55 pounds. Abby managed to not kill herself, Roxie or anyone else while dealing with this situation. She deserves a medal, or at least a biscuit).

We have to get to Dr. Winokur's office by Noon or else we'll need to go to the ER.

Have I mentioned it's New Year's eve?
It's New Year's Eve. That's not a time you want to be in an ER. Any ER.
It's the height of cold and flu season. That's not the time we want Simon in any ER.
We do not want to go the ER.

Blessed baby slept the entire drive on Highway 1 and most of the rest of the drive. We made it with 15 minutes to spare.

Simon is a trooper.

Dr. Winokur was able to rule out RSV and prescribed and simple inhaler for Simon along with some Prednisone (steroids).

So not fun trying to hold the mask to his face and get him to breathe in the Albuterol but so relieved that we're here and not in the ER and not dealing with something like RSV.

After a half dose of Albuterol Simon is already sounding so much better.

We head home with a familiar baby in the back seat and by the time we're getting out of the car, Simon is back.

And then....Simon is back with a vengeance!

There's something that's happened to our little fella since his first hit of Albuterol and subsequent regiment of steroids.

He's turned a little bit bionic.

I understand the Albuterol making him a little amped up. That's to be expected. However, in the five days since.....yes, his cough has been clearing but holy crap has he been up to just a few other things.....................

Simon took his first solo walk. Seven steps from Mama to Mommy.
And then back again.
And again.

He did it four times. He won't do it again but then let's remember who we're talking about.

And.......................

He's eating!

We're not taking his G-tube out anytime soon but holy crap!!! He wants something to nibble on all the time!
He brings a full spoon to his mouth and licks most of the food off of it!! He drinks from his water bottle!!
And he does all these things over and over again!!!

On Sunday we went out for Dim Sum and I swear to god that boy sucked a piece of pork (three in fact) so dry that I could have put a tag on it and Roxie would have a nice new leather collar. He also chowed on some sesame ball with bean paste and got jiggy with some egg custard. It was awesome.

Today (Monday) he has worked some carrot, tofu, asparagus, Trader Joe's cat cookies, prunes, avocado, egg, fruit leather and miso soup.

I know there are serious side effects to Prednisone with long term use but hot damn, who cares if he's really hairy and gets called 'moody'. I'm totally pro-steroid now.

Kidding.
Mostly.

I did cry a little at dim sum because all of a sudden I was having a typical toddler eating experience.
I got completely fahklempt. There I was, out with my 21 month old child, and he was making a mess at the table but also taking bites from my hand of offered food. It was ridiculous but I'd never had that experience before and it felt so normal. Just not my normal.

Up till now.

I really hope it doesn't go away.

We finished our run of Prednisone today. I hope hope hope that we can keep this momentum going and even if the 'roid' effects subside, I would love love love if the enjoyment and delight in eating stayed.

My secret dream is that 2010 is the year in which we begin talking about taking Simon's G-tube out. Just maybe.

As much as I am loving the 'roids' I will say that I am also very happy to be done with them. It's true about 'roid rage'. I've heard the expression and I will say that Simon has been exhibiting some interesting mood swings these last five days that we have previously not seen the likes of.
He has also stopped napping and I would love that to come back too.
That combo, of steroids and not napping, might have something to do with the mood swings, maybe I don't know but I will say the first day after starting the steroids, he did in fact sleep 4 hours and STILL was a nutcase.

My sweet sweet nutcase.
Holy crap I love him.

More pics to come in the next post.

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


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





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


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


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


Sweet sweet sweet.


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



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



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

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


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



Dreamy




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

"So PopPop, this is where I go up and down stairs at school,

you can do it with me if you like."

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

That's my boy!

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

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

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

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

Simon found the right pair of glasses to really highlight his eyes.

Thank goodness because I don't think they were getting the attention they really deserved.

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

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

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

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