Like The Weather

I meant to sit down and write several times over the last few weeks. Really I did. Alas, we have been super busy with appointments, assessments, meetings, barfing, and feeling just like the weather here in CA.

For the last few weeks we have had heavy gray clouds, mixed in with torrential rain, and bitter cold (hush you Easterners, 43 degrees is really cold here).

And like the co-dependent person I have become, I feel like my son, and evidently the weather as well.

Up until this past Saturday, Simon has been battling the barfs, the bugs, and the 'bummers'. He's had a cold for what seems like forever and the mucus has just thrown him way back in terms of gagging and throwing up. This does not make for easy days and of course less than zero headway when it comes to food; smelling food, seeing food, talking about food, and certainly not putting food anywhere near his mouth. It's been a really rough time , really since he's been sick with pneumonia back in late December.

And, that's been really hard for me. The contrast between where we were at just before he got sick- with the interest, and chewing and swallowing...THAT was awesome!

To have been thrown so far back in what feels like this last area of challenge was harder on me more than anything. Simon is Simon. 30 seconds after he throws up he's fine. He's back. He's ready to move on/try it again/laugh it off.

I have so much to learn from him. And I can only hope/pray that he can hold on to it as he grows.

This little man who has been through so much....knows how to live. He loves life. He hugs people that he's just met. One simple positive interaction with a stranger and he's ready to bestow on them his new favorite phrase. "I love you. I missed you."

Yes, I know he's only almost three, his language is delayed even younger than that, and we're beginning to see some interest in other people's reactions to such things.... but how lovely is it that meeting a new person and loving them is that simple.

How lovely is it that when he feels bad or sick he is right in it AND the moment that he feels better, he believes that the moment has truly passed and can get on with the good stuff.

How nice for him.

I mean that in both ways. Really, how nice is it for Simon, the boy who has endured more discomfort than any one person should have to endure in a lifetime, to be able to have that skill and stay rooted in the 'feel good' times.

And...

How nice for him (dripping with sarcasm an jealousy) that he unintentionally points out to me over and over again that I am still working on this. That I hold on to the barfing/time spent cleaning up from yesterday and feel the weight of it today, spending energy on whether or not it will happen tomorrow.

I know it's a beautiful piece of early childhood development and think Simon's got it in a deep way.

It's my hope that I go on learning it from him and as well I can, mirror it back to him as he tries to naturally grow out of it...the little stinker.

And, like the weather, Simon, and therefore I, have turned a corner. On Saturday the sun came out and so did Simon. No, he has not proclaimed any new sense of self or orientation but the boy is back in a way that we haven't seen since his bout with pneumonia back in December.

He is talking up a storm, making new faces (think Dana Carvey crossed with Jim Carey), saying new phrases (my personal fave is "hold my hand") and ........................EATING!!

Yes, we've picked up where we left off. Almost exactly.

It's like the last 7 weeks never happened and he's so excited about putting food to his mouth and even trying to chew and swallow. Yellow curry, black beans, squash, pasta O's, Salsa, spicy spaghetti sauce, BACON!!!

I am beyond ecstatic. Like the weather outside right now I am feeling the clear skies, the sweet snap in the air, and the sun warming everything. Like Simon I am feeling in the moment, not needing to hold on what might be coming or what has just transpired. It's like some sick Air Supply soundtrack is playing. This is so much better (for everybody) than the Morrissey soundtrack of the last few weeks, and I don't even really know Morrissey's music that well but wasn't it uber depresso?

This is a great way to enter into one of our most interesting months yet. March brings an OT, PT, Speech, and developmental psych evaluation along with observations and the IEP meeting that will decide what services Simon is eligible for when he turns three.

Developmental, medical, financial, it's all in the mix.

So, not unlike another 80's pop reference I do feel a little like I am "living in a powder keg and giving off sparks" but more like Fireworks ala Katy Perry.

That's right, I just brought it to the here and now.

Baby you're a firework

Simon and Manav...swinging at FairyLand...

the only time I'll be able to get away with a caption like that.

A boy, his dog, and a wicked deep puddle

A boy, after a stumble in said puddle

Hunting in the wild

 <3 <3

Good Grief

I don't often drive westbound on Hwy 24 because my regular driving doesn't take me that way. I don't avoid it and certainly have driven it more than a couple of times since that fateful turn around almost 2.5 years ago. That's the route where my Dad and I were coming home from lunch with Jaime, on our way to baby swim class, where I first heard Simon wheeze and decided that it would be best not to put off going to the pediatrician (back in Walnut Creek).

That's where it all started, the exit for Telegraph Avenue off of Hwy 24 (then ER, chest x-ray, life changing diagnosis, ICU, etc etc). One turn around and my life is changed forever.

Today I ended up driving down Hwy 24 as Simon needed just a few more minutes to fall asleep for his afternoon nap. It's a gorgeous day here in Oakland, not a cloud in the sky, with temperatures in the low 60's (sorry rest of the country).

And there it was. That feeling I get each time I drive down that stretch of road. It's like the air is buzzing and I feel time is layered around me (like a nice seven layer cake from the Raleigh hotel where my dad used to sing the High Holidays). It's all right there in front of me, the time before, the time now, the moment of change.

I hate it. I hate Cardiomyopathy. I hate that as I was driving, I was also keenly aware that my son was hooked up to his feeding tube, a larger than normal heart beating in his chest, getting ready to go home and take one of his 16 daily doses of various medications.

I hate the feeling of not knowing if he will be one of those kids that improves until his heart is in the normal function and size range only to decompensate at some point and need a transplant OR if he will be one of those kids that lives with medications and some decreased activity level for the rest of his life but no major change from how he has been since becoming stable.

(Less so these days but still) I wonder if Simon will die.

I can't help myself.

Especially when I find myself right back there at the spot where it all began. Where I first had the very real thought 'I wonder if Simon will die'.

Then, and here comes the feel good part, I thought about how much I love my life.

What?!

Right?! I know.

But there it was. Now I don't want you to think that I wouldn't trade it all in for a minute if there was that choice. No cardiomyopathy for Simon OR love your life right now...derrrr, no contest.

But for that time and even a little time since then, I'm feeling all the good things outweigh the sucky.

I love that my family can spend the day together sick, noses running like Niagara, and still laugh it up. I love that we have family and friends that bring us so much joy (and sushi!). I love that my son spends most of his time being a stellar toddler, smiling, making jokes, and charming the pants off the world at large. I love that I have Jaime at my side to share all this with. Almost nine (very uneventful *) years together and I am still 100% sure that she is the perfect partner for me.
* Italics = intense sarcasm


We have enough. We have more than enough. We rock!

I miss things for sure but I'm feeling a little in touch with the divine right now.

Sure, I can hear the laundry machine is almost done with the first of three loads that I have to do (barfing has not really ceased yet) and a napping Simon is still attached to tube coming out of his stomach for medication administration, but I am more than content. I'm blessed.

PopPop Simon Laura

 Why PopPop is called PopPop

 Dunk!

 Jumping!

 Just Chillaxin'

 Happy Monkey

 Simon discovers Mud puddles

 Where my homeys at?

 Ready to follow the Dead

 First Super Bowl

 So Pretty (he's going to kill us)

 No really, he's going to kill us someday

 Cousin Moses

 The only motorcycle he will ever ride

 Can you see why Wyatt might be a little nervous?



Into the Ocean

 
Long time no write.

Let's see...since we last spoke:

On January 5th, I (Jaime ) celebrated my 35th birthday. For once I took the day off, which I felt I had earned since I spent almost my entire vacation the week before in the hospital. It was lovely.

Two weeks ago, Laura sliced off the end of her thumb (like 1/4 of the thumb above the first knuckle!) when I made her slice lemons on the mandoline. We spent 7 hours in an ER while our friends watched Simon. It was awful (she was in pain and the bleeding took quite a while to stop and I was slightly re-traumatized from being in the ER with her after her head injury) AND we actually got some real quality time together. Yes, quality time. In the Emergency Room. I guess it sounds really sick when you say it out loud. But we actually had a kind of a nice time together, if we ignored the people barfing and yelping in the other bays.

Laura's Dad came for a visit and we had very sweet times together.  Bernie Fitch is a baby whisperer.  Simon was clearly besotted and misses his Pop Pop.

Last weekend we all went to Calistoga to celebrate my birthday and had a lovely time soaking and eating and chatting with friends.  And miracles of miracles, no one went to the hospital on this vacation.

We'll work on photos in the next post...
Now to begin the theme that may continue for a while.  Preparing to set sail in a big, vast, potentially terrifying ocean called the Oakland School District.

Yesterday we had a rep from the Oakland Unified School District come to our house along with a rep from the East Bay Regional Center. The Regional Center has been coordinating all of Simon's services for the last couple of years. Those services end the day Simon turns 3 so we were meeting with the school district rep to talk about all the different assessments Simon will need in order to figure out what services the school district will provide us and what our options are for preschool.

It was great and terrible. The district rep was very sweet AND I kind of wanted to slap her across the face for asking so many questions about Simon's development that we had to answer "no" to.

This is what most of yesterday sounded like:

Her: Okay, lets talk about his blah blah (speech for example)

Me: He talks a lot but he doesn't say much.

Her: Does he ask for help when he can't do something or get something?

Us: No. He may just say the noun. He NEVER says, "Mama/Mommy, I want the ball"

Her: Does he point at things he wants or pull you to something if he wants it?

Us: No.

Her: Can he follow simple directions?

Us: Not really. If you ask him to do 2 things in order, he will only do the last one you requested.  We're working on this.  A lot.

It went on like this for about an hour and a half. A few timeswhat she was proposing that he might do was so preposterous I almost laughed out loud.  Or cried.

About halfway through, we had a classic example of why we're so concerned about his language processing. He made a funny face, so I asked, "Simon, do you have poop in your diaper"? No answer. I ask 3-4 more times. Finally I say, "Simon, do you have poop in your diaper, yes or no". He then cheerily parroted, "Yes and no, yes and no". I asked again. Again, "yes and no". I said, "Which one". He finally says very definitively, "YES!". I go check and of course there's nothing in his diaper. I just look at the district woman and say, "This is what happens most of the time".   Fortunately she is a speech therapist by training, and she said she could really see what was going on.

It was great to know that she sees it  (this sounds awful) because we actually want things to look as bad as possible.  If he's just sort of borderline and is having a good day when they do his assessment, he might not qualify for the services he needs. I was so happy he was doing stuff to show how not typical he is. It's beginning to feel like we're not going to have to worry much about him not qualifying for some of the basic things. His developmental progress...frankly...kind of sucks.

It's SOOOOOOO frustrating to me to have a kid that can talk but that can't really communicate. He has a huge vocabulary but he can't quite seem to figure out how to string it all together to be useful. I keep expecting him to be able to answer simple questions like "do you have poop" or "who did you see today when you went to the park" and he can't/won't. It's making me a little crazy. It's like having an infant in the frustrating ways of not really knowing what they want, but he's 3.

It also makes me concerned that these delays are not from the hospitalization but that he may have a bigger syndrome (I keep wanting to find out more about testing for Noonan's syndrome, for example) that includes Cardiomyopathy as well as cognitive delays. I'm not quite sure what to do about this or if it would even matter in the long run- the syndromes aren't "treatable" and he's already on everyone's radar.

I just want a goddamn answer. WHY!?  Why.  Why does he have Cardiomyopathy?  Why is he so tiny?  Why does he have trouble with his balance and running and why won't he jump and move around like other kids?  Why does he barf all the time?  Why doesn't he eat at all? Why is his language processing so bizarre?  Everyone just guesses at the answers to these, including his doctors.  "He was hospitalized for 4 months" doesn't seem like enough of an anwer for me. I just want one damn piece of drift wood to hold onto. Just one.
 
In terms of what the district may offer, we don't really want him in a "medically fragile" class because that is basically for kids who are really, really debilitated (like on ventilators, not ambulatory, etc).  We also don't think it would be appropriate for him to be in a typical preschool.  Our early intervention program folks (and we are too) are worried that if he goes to a typical class he will getting tagged as the really cute kid who says cute catch phrases all the time and slip through the cracks. 

I think our goal is an enriched speech and language class, which the district offers (a few of them actually).  I know Oakland Unified has a horrible reputation in a lot of ways, but it's actually the best place for us to be right now b/c the district is so big, it has a lot of options.  A smaller district might not have the appropriate stuff for him.  So I'm cautiously optimistic.
 
So as we begin this process, and April 9th approaches it feels like we're about to leave this little pond of our Early Intervention Program and get whooshed into the big, vast, ocean of the Oakland Unified School District. 

It could be great, but it also might be really easy to get lost out there...

Home

 

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.