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Our week in Pictures.

Beach combing in Gualala

 Simon meets Sea Flora

 A boy on the beach

 Jaime and Mamaw are ready for the Pole expedition

 Mellow Mama and Simon

Little did we know that the mellow would turn to lethargy and the lethargy to feverish and the feverish to Pneumonia

Trying to keep cool and keep the O2 cannula in

Our first wagon ride complete with oxygen tank

He can still find the smile

Day of departure- Simon's making plans for a big NYE

(Please note the size of the bed- Jaime and Simon spooned in it together)

Heading out

I have conquered pneumonia! I am the master of my domain- HOME!!!!

I am sure that there will be a blog sooner rather than later about the whole adventure/ nightmare but right now it's 9pm and both Jaime and I are completely tapped.
Happy New Year to all and humongous thanks to all that called, texted, brought over food, ordered us food, sent love, light, prayers, healing thoughts and WTFs. All were welcome and central to our getting back home safe and sound.

and to all a good night.

Angry

Jaime here:
Today I am angry.  I am so tired and am I so angry.  I am angry that we are in the damn hospital again.  I'm angry that none of us are getting enough sleep.  I'm angry that my son is stuck in an environment where he can't touch anything because it's dangerous, germ-wise for him, or he's dangerous to someone else. I'm angry that Simon has to wear a mask every time he leaves our room.  I'm angry that I can't figure out what we need from friends who are offering to help, even though we've done this before.  I'm angry that I don't feel like it's safe for friends with little kids to visit because Simon has something potentially dangerous for them.

I'm angry that maybe this is caused by RSV and we didn't get a shot to prevent it because we all thought he was old enough not to  need it.  I'm angry that I have zero feelings right now for anyone, except Simon,other than annoyance, frustration and impatience.  I'm angry that our roommates left and they had a space 2x as big as ours with a window and we have been told that we could move over there but housekeeping hasn't come so we can't move and the garbage is overflowing and it feels like we've been living in a cave.  I am angry that the standard of nursing attention is so much lower on the floor versus the ICU or that our expectations are so much higher and that makes us look not like the "on top of it parents" but the "annoying parents".

I'm angry that Simon's pulse oximeter is malfunctioning and the dude that came to fix it basically said it's b/c Simon is too wiggly.  Bullshit.  It's a children's hospital.  FIX IT. This frickin number is the only thing that is keeping us in the hospital.  If you don't fix it, I spend all night being woken up by an alarm that says that my son has no oxygen in his blood when, in fact, he's wide awake and pissed about being in the hospital and very much alive. I'm pissed that the light in our area is broken so we only have bright light.  I'm pissed that our chair bed is broken so if you stand on it (which you have to do to get to Simon if the bed is down) you practically break your neck b/c it slides apart.  And I told a nurse about it 2 days ago.  And I'm too damn tired to really pitch a fit.

I'm angry that this is how we had to spend our vacation.  We got three days.  Three.  It was supposed to be almost 2 weeks. I so needed this time to reboot and instead I'm running on reserves.  I'm angry that we might spend New Year's Eve in a goddamn hospital instead of Gualala or even our house.

I think that's it.  I'm sure I'll be overflowing with gratitude tomorrow when I've slept and been in the sun, but today I'm surly.

Oh, and I'm pissed that the delivery guy who is trying to deliver our freezer flaked yesterday, knowing that one of us left the hospital to be home to receive it.  A-hole.

Back in Day 3

 



We are 22 hours into our return stay at Children's hospital. It's only just starting to feel real to me.
It's been 21 hours and 50 minutes of feeling that old 'What?! What the FUCK is going on'.
Where is my Simon, who loves to joke and insert his own name into anything and everything it fits or doesn't fit into. Old McDonald has a Simon? Totally.


Instead for the last 48 hours Jaime and I have been trying to manage this very sick and sadly very familiar child/world where we know how unplug lines and get Simon untangled before alarms go off, which Dr's to ask for and when, which nurses can be our best friends and which we should trust in no matter how we feel about them. We know what to order from the cafeteria and what toys to bring from home that won't take up that much space but might just bring out a smile or "otay" from Simon. We know how to keep in touch with our community and rely heavily on the texts, calls, and messages from our wide ranging family. We know how to rattle off Simon's list of medications and blenderized formula bolus feeding schedule. We know how to do this......
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


It's now Tuesday night. I'm tired. Simon is mumbling falling asleep phrases next to me clearly feeling better than three hours ago.

Jaime and I left him with Dianne and Dre to go home for a few hours and eat and clean and make him more blenderized food. When we left him he was feeling so crappy and certainly not any better than when we were first admitted.........blah blah blah viral not bacterial, blah blah several more days to kick it, blah blah, heart not having to work too hard right now, blah blah blah.

You know what, I'm sorry I can't regale you with details right now. All I can say is how fucking scared and out of my body I have been for the last three days. It's like having PTSD but the T is so very fucking real again.

I watched Simon struggle with breathing. I watched him soak his pillow with sweat. I watched as he pulled hard from both his neck and stomach trying to take in air. And I watched it get worse and worse over the course of hours. I watched as he regressed and couldn't get out simple 'yes's and 'no's. I watched the hours go by and couldn't get a medical person to tell me what was going on. I felt my head fill with facts but no feelings and I watched as Jaime and I moved around each other taking amazing care of business but not knowing how to really take care of each other.

I feel numb and exhausted and I just want to go home. I want to take Simon home. I want Simon to be better.

I don't ever again want to have to watch him struggle to breath. I don't want this.
Done
Over
Finished.

But it's not, and tomorrow will be another day. Hopefully better.

Praying for sleep for us both

Back in the Hospital

Just a quick update as I've just spent the last 8 hours in the ER and left Laura and Simon on the 4th floor of Children's Hospital Oakland.  Hell hath no fury like an exhausted, sick toddler.  Holy crap.

The short version is that they think Simon has pneumonia and are keeping him overnight because his blood oxygenation is below normal (88 without additional oxygen) and anything below 95% is concerning.  He was punky yesterday and seemed to have a mild fever (travelling and didn't have thermometer) and an occasional deep, awful sounding cough, but was basically okay, just seemed tired. Today he barely got out of bed and by 2 pm Laura decided to go get a thermometer.  He still just felt sort of warm but nothing extreme but the thermometer told a different story.  His temp was 105, he was breathing pretty fast by the time Laura got back from the store and we were 4 hours from his doctors.  We did an abbreviated pack up of our essentials and left my mom and stepdad at their house on the coast and hauled ass to the ER at Children's Hospital Oakland.

The good news is that his fever is under control with Tylenol and his heart seems to be doing pretty well in terms of low heart rate and normal breathing.  His oxygenation...not so much.  The chest x-ray didn't show anything and an exam showed a possible left ear infection.  Initially we were told no evidence of pneumonia on the xray and thought that ruled it out but our cardiologist thinks that the low blood oxygen is evidence that his body is working harder and since his heart seems to be doing fine, he thinks it's a bigger infection (pneumonia) than just an ear infection.

Will update tomorrow.

This sucks.

Awesome Time

The last couple of days have been awesome. Ice skating and eating. Two things I love.  Well, three. I really love me some Simon Lev.

We started off our holiday time with a fun trip to the carousel in Tilden Park on Thursday evening. The weather outside was frightful (by California standards) but the Carousel inside was delightful.

Yeah, I'm riding a pig.

The best way to steer a pig is by his ears

 Thomas!!

I love Mamaw and I love THOMAS!!!

"Cockadoodle Doo!!" Really that's what he said

On Saturday we kicked the day off with an awesome morning with Anna, Hillary, and Wyatt at the Bay Area Discovery Museum.

Simon: "this one's nubby" 

Anna: "this one's squishy"

Working the docks, hauling crab, it's good work if you can get it

Have I mentioned how much I like Spaghetti O's

And then on to the Special Kids Ice Skating Party at Yerba Buena.

Skating with Santa

Skating with Mommy

"one my own, on my own!"

Just like his Mommy at his age

Simon skated for a solid hour!!

Meetin' up with our PIP peeps

 We had a pretty good time

.Um....x100!!!!

Left ventricle non-compaction/ Dilated Cardiomyopathy, bah humbug!  Simon Lev is a winter wonderland unto himself.

Mind Blown

A new diagnosis.
AND spaghetti O's

It's been quite a day here in Shimmy La Land.

I'll start with the spaghetti o's. The day began with a lighting bolt of an idea...ok, ok!  Fine, I'll start with the diagnosis one.  That's the one that's inspired the title of this blog anyway.

Simon and I were at Children's Hospital today to celebrate our dear friend Saun-Toy. She was receiving her Employee of the Month award and there was cake.

As we're headed to the elevator on the 2nd floor (post cake and Simon saying "Mazel Tov" to all the recipients- during the CEO's speech) we pass the door to the Cardiology offices.

Simon makes a beeline for the reception desk to say his hello's. Of course we ask if Dr HunkyPants is around, just to say Hi.

He is and while we're exchanges pleasantries/exclamations of how good Simon looks (us/him) he mentions in passing that he finally got Dr. Towbin on the phone and had a conversation with him about Simon.

This is Dr Towbin who is the foremost cardiologist in the country for Pediatric Cardiomyopathy. The Dr that families from all over the country if not the world come to see when it comes to this frikkin' disease and making sure that as much of it can be understood as possible. We've been trying for months to get him and his office to return our calls and have sent in Simon's records twice to see if we can get him to simply look at them and make sure that we're on the right path.

Quick shout out to Dr Rosenfeld for being the type of doctor that has no problem working in the best interest of the child and consulting left and right both when he and we have thought it might benefit Simon. Now that's an awesome quality to have in your primary cardiologist!!

Hunkypants continues to say that while Towbin was looking at Simon's echocardiograms, he seemed to think that there was in fact evidence of non compaction of the left ventricle. What this means is that Simon's Dilated  Cardiomyopathy (DCM-a very large umbrella term) has an additional diagnosis of LVNC (left ventricle non compaction) that allows us two things: 1) a greater chance at understanding where his DCM may have come from (70% of patients with LVNC can be traced back to a genetic disorder and there's a test for it)
AND
2) give us greater insight into a longer term prognosis.

Now while #1 is nice and all, since it won't change the management of Simon's heart all that much, I'm interested to see if our insurance will pay for the genetic testing but won't cry buckets if it won't.
 I'd be happier to not have to say Simon's condition is idiopathic but it's not going to rock my world.

What does rock my world though is hearing Simon's Dr say "what's good though is that we know patients with LVNC tend to be less symptomatic and do better with their decreased function than those kids with just DCM." It means that there's greater understanding of this particular subset of people living with DCM. It's more information on how the heart is working or 'not' working as the case may be. LVNC is about the makeup of the muscle and not just it's function.

The muscle itself is spongy or not-compacted- see the channels in the left ventricular bottom wall..

It's a lot more than you need to think about dear reader. However, what it means that I get to think about is more information, greater detail in terms of prognosis (and even better that it's a more positive prognosis), and subtle but distinct steps to take in maximizing Simon's treatment.

YEEEEEEHHHAAAAAAAAAAAAAAAAAW!!!

We will move forward with making sure that Simon is at the maximum doses for all his medication, especially his beta blocker Carvedilol, and look closely in future echo's at the structure of the left ventricle.

It's not like we've discovered anything monstrous but gosh darn it, it feels huge. So much of what is so amazingly difficult in this world of Cardiomyopathy are the unknowns.
Where it came from,
what tomorrow might be like,
what five years from now might be like,
never trusting in the improvements completely but giving thanks for each season spent out of the ICU,
never ever getting to say it's 'resolved,
seeing the wide spectrum of what it means to 'live' with this disease (playing organized sports to being wheelchair bound with 24/7 oxygen),
and waiting, always waiting to hear that the heart function has increased or decreased after every Echo knowing that it really could go either way no matter how long you've been at this.

It's just a little more clarity. Like knowing that the waters that you're swimming in are in fact salt water and a little more buoyant than you previously thought.

 I still feel the vastness of it, I'm still swimming with no sign of land, but I can understand my environment even just a smidge better and rely somewhat on what I know about swimming in salt water versus freshwater.

Speaking of saltwater- amazing transition Laura!- Simon has a new found love.

 Pasta!!

The short version is that Simon is eating!! Something has shifted in the last two weeks and all of a sudden we are on the fast track to getting Simon eating orally versus being tube fed. This morning we went out to Trader Joe's and bought Simon his first can of Joe's O's (essentially Spaghetti O's) and gosh darn it, if the boy didn't take at least 10 licks off a spoon, including some biting and chewing of the smaller o's. I nearly crapped my pants.

We sit down and play with food no less than five times a day (and by sit down I sometimes mean in the car gnawing on a piece of turkey jerky). But hot damn, to see my son nibble, chew and swallow....and all in the same minute....that's amazing. We don't think about it, and when I say we, I mean you all out there that aren't tube fed, but the simple act of eating....well, it's not.
Simple that is.

And, besides taking the spoon and feeding himself, he also let me, over and over again, get an 'o'  and some sauce in there.
I love getting to feed my son. Just as most parents are thrilled to let their kid's feed themselves, I am getting the experience that I missed out on for the last 2 years. I'm getting to feed my child.

There's that simple lean in that he does when I have the spoon right in front of him that makes my own heart pop a little.

It means not only that he wants what I have to offer to him (and how sweet is it to be able to fullfil a simple desire- how much longer will that last?!) but there is a beautiful element of trust to it.

Simon has not eaten by mouth for over two years. There were a lot of important reasons not to. Staying alive and conserving energy, not wanting to add to the feeling of nausea or bring on vomiting, and last but not least, not having the skills to do it with the consequences being dire (not being able to breathe/ choking).

That he is now allowing me to put food in there (and I mean in there, back on the molars to practice chewing!) I feel so completely honored and grateful.

We've come a long way baby! (reclaiming that phrase).
I know we have a long way to go. We're not making reservations at Chez Panisse anytime soon but I will say that tonight at Sushi, Simon slurped no less than a 1/4 cup of miso soup and gnawed on an almond sized piece of barbequed eel.

That's my boy!!

Slurping Spaghetti O's

Rockin' the Preppy look

One day, one Spaghetti O at a time.

Mixed bag......really really mixed bag

He said to me "I want to listen to 'Down By The Bay', yes." That's a 10 word sentence, not echoing anything before, clear as day.
 That's pretty amazing AND he was munching on a french fry dipped in BBQ sauce when he said it!!! We were on our way to speech therapy at the time and I couldn't wait to tell Cece (his therapist) about it. We've been talking about wanting to see Simon initiate more and deliver full sentences versus 'chunk' statements.
Then his speech session was delightful; full of pointing, identifying and following directions. He was dreamy.

However...

Earlier in the day we had our first of two meetings (in three days) to begin the legal process of seeing what services Simon will qualify for from Oakland Unified School District when he turns three. It's a complex process that includes several assessments to see where he continues to carry developmental delays that could inhibit his 'learning' process in a school setting.  In addition to that we'll need to assess where he sits medically in terms of being able to handle the germ fest that a typical school might be as well as the energy output required for attending school (even a half day pre-school will be more than he's used to right now in terms of activity.

We went over his last progress report and no surprise, he's still globally delayed. Fine motor skills, gross motor skills, communication, play, socialization, pretty much everything. Not surprising or even disheartening just not so much fun to see it all written down on paper with those age range summaries at the end.
"Simon is operating at the 18-24 month age in terms of....."
"Simon is operating at the 15-20 month range in terms of....."

No fun. "no owwies, but no fun" as Simon likes to say.

Ok, I've seen it before. I know how seeing it all on paper hits and then goes to the back of the filing cabinet in my mind.  Then his caseworker says "You know, he could qualify for Status 2 given his delay, do you want to do an assessment for it?"
Status 2 is where services from the Regional Center would continue after he turns 3 instead of being cut off. However these services are based on a formal diagnosis of Autism or Mental Retardation.

Deep breath.

I don't think that Simon is anywhere on the autism spectrum. Not a big concern. But M.R..... (and that's still the archaic term that they use!)

His language processing has already been raising flags AND we know that he was given several medications when he was sick that can have serious cognitive side effects AND he had several dangerously high fevers (106F at one point) when he was in-patient and having septic infections, AND he was very very sick and required a ventilator when he was first symptomatic with heart failure.

So.... could Simon have some mental retardation? Well, technically he does right now if we're talking about the literal sense of the term. "the act or result of delayed mental capacity"  He is late in several areas. It's true.

Sigh. Big sigh.

I think it's important to have another set of trained eyes look at Simon. I signed off on the assessment. It's a 2 to 4 hour process and will most likely take place sometime in February. He'll probably love it. A new person, giving him 'fun' things to do, watching his every move. I'm not worried about that.

But really?! I don't even know what to write. I don't even know what to feel at this moment.
But, really?! Really?! This is going to hang out on our plate for the next couple of months/years/life?

This is Simon. Sweet, funny, loving, growing, changing, stopping strangers on the street with his smile and eye contact, Simon.

Simon who is living with and triumphing over Cardiomyopathy in ways more brilliant than the brightest star in a dark night sky.

Simon.

Really?

Sighs and deep breaths.

All I got right now.

Light Returning

Four Questions:
Who is this young man that asks for food all day throughout the day?
Who is this little boy that hasn't barfed in days?
Who is this little mensch that learns to say Happy Hanukkah and eat gelt?
Who is this boychik of mine that says "I'm hungry" and "yum" and actually means it?

It's Simon Lev, surprising us all again. He's on his own timeline and progression for sure but holy heck is he walking on down the road, steps sure and steady.

I don't know what happened but after these last few weeks of having a cold and then a wicked stomach bug, he's 'eating' in ways I've yet to see.

Bringing spoonfulls of miso soup to his mouth (I stopped counting after 10). Licking baba ganoush off a spoon and veggie stick. Letting me put crumbs of ritz crackers on his tongue. Chewing rice size bits of scone, cheese, apple.....and then swallowing them!!!
Asking asking asking, always asking for something.

It's awesome in the true sense of the compound word.
I am certainly experiencing some awe.

I learned my lesson though a while ago though and don't freak out anymore while we're eating. Once was enough to scare the bejeezzus out of him and almost make him cry I was so excited about some lick or taste.
No, now I just have the joyful freak out inside my head and work hard to control the hyperventilation while saying a very calm and subdued "nice job Simon."

This is so amazing too as we're celebrating Hanukkah, getting ready for the Solstice, and Christmas (aaah the wonders of the mixed family and the month of December!).

Talk about feeling the return of the Light!

Joy!

Preparing for his solo aria

Get your motors running...

Riding the range (solo!)

On the first night of Hanukkah my two moms gave to me.... (don't worry, the next night he got a robot- we like to mix up over here)

Look how much scone I can fit in my mouth!

I do love me some paprika

A boy, his diaper, a g-tube button and a french fry.

What more does one need?

The video is precious not just for it's silent action but for the exclamation at the end. How many of us haven't said the same thing at one time or another?
http://www.youtube.com/watch?v=qyVaBwFHcs4

It's from a book.