Fuming

I am so angry. I'm furious.
I'm fucking tired of the world not being ready for my kid (our kids, kids who don't fit the mold, young humans in general).
I'm yelling and ready to punch someone or more appropriately slap someone upside the head so that their teeth rattle.
Teeth.

Simon went to the dentist today. A dentist that was recommended to us by another family that has a kid with 'special needs'.  The dentist that has, in his Bio (on the Medi-cal dental directory- THAT IS MOSTLY FOR KIDS WITH SPECIAL NEEDS), that kids with special needs is one of his specialties.

Simon and have been talking about it off and on for a few days to help him be prepared but not stress him out. He's holding it together and as we approach the office is already talking about giving his new dentist a hug when he meets him.

The office is filled with waiting families and there is no where to sit so I take Simon just outside the door to sit and fill out the forms. The form that includes information on why we might be seeing a dentist that works with kids with special needs.

I WRITE DOWN WHY WE HAVE CHOSEN THIS DENTIST THAT HAS IDENTIFIED HIMSELF AS SOMEONE THAT WORKS WITH KIDS WITH SPECIAL NEEDS.

(I should have left at this point seeing the patient through the window that was being held down by his mother for a teeth cleaning but hindsight is 20/20)

As we are brought in to a shared room, Simon gets himself up to the chair, which is actually more like a table, and lies mostly down (pretending to do sit ups). I get asked a few questions (WHERE I REPEAT WHAT I HAVE WRITTEN ON THE ABOVE MENTIONED FORM THAT HE HAS CLEARLY NOT READ) as Dr x  places his hands around my son's ears and pulls his head down gently.

And he is where it goes south or really let's just say to HELL.  He doesn't tell Simon what he's going to do.  Just puts his gloved fingers in Simon's mouth and begins to feel around. I start to explain to Simon that Dr x is just feeling around as my child becomes more and more agitated.  When he's done with the feeling, he reaches over and grabs one of those really fucking scary looking dental picks and goes to put it in Simon's mouth.

It's here I have enough wherewithal to stop him and ask him to show the device to Simon and tell him what it's for.

I get nothing. He barely pauses and begins to tap Simon's teeth and asks me to hold his arms tighter. I do so automatically because at this point I just want to finish and am on autopilot.

I fucking hate autopilot.

Because what happens next I'm having a hard time forgiving myself for. Before I could even realize what was happening, the tech hands the Dr the electric polisher and then places what looks like a metal torture device into Simon's mouth to keep it open. I can see that he is starting to really lose it, with fat tears coming  out of his eyes and his tongue rolled back in to his mouth. He is terrified.
I am in shock.

What is happening? There is no talking, no explaining, no visuals, nothing. We move directly from that into a fluoride treatment and before I know it, we are done. Simon is released and as he sits up he vomits all over me and reaches for me clinging for dear life. As we are given a paper towel and shown where the bathroom is to "clean him up," I hear the Dr say " you know next time we can use restraints on him." He is saying that to me.

In front of my son.

As he his moving on to the next patient.

We get into the bathroom and I go to clean Simon's shirt and shorts but before I can get two swipes in, Simon has moved into my lap, buried his face into my neck and holds on for dear life as he lets out the most heartbreaking moans and sobs.

I let him rip and at this point start feeling what has happened. The entire appointment has taken less than 10 minutes.  I think we spent at least that in the bathroom just holding each other tightly and waiting for the feeling of trauma and violation to settle.

Simon is fine and even excited to get his goodie bag of toothpaste and brush. He manages a thank you and goodbye to the dentist and office staff and we are off to get some french fries.

He's ok.

I am not. I start shaking with fury.  I'm still shaking as I type this.
On my evening dog walk I finally call and leave a message on his office voicemail.
I am not kind.
I demand a call back.
I am not kind.

When does this end? When do I stop having to hold my son down?
When does the world slow down just a little to help the small person that's scared?
When do we give some power to the ones that feel powerless?
When do we let our special little ones have some semblance of control or honor their curiosity and fear?
When do we let the child that is afraid of the dentist touch the tools, hear what's coming, practice on Mommy, do whatever they and their big person think might make this easier to do before we move in with loud and scary apparatus?
When do we stop moving at a lightening fast pace to pack in as many patients as possible because it's the denti-cal program and pays significantly less $$ than private insurance?
When do the PTSD triggers end?

What

the

FUCK?!

The video below only made the night end a little better.
It is one of my favorites.

https://www.youtube.com/watch?v=GBUehYqXkfo

Would that I could go all wild rumpus on Dr x's ass, I would.
And not in any kind of Quaker Tikkun Olam Chaplain sort of way either.



Scenes from the weekend.

A Little Broken

I'm alone in the house. Simon is with his Aunties. Jaime is at a workshop all weekend.

And the computer has been calling to me. It's been calling for weeks but I've been avoiding it. I haven't wanted to sit down and write even though I have blog posts starting in my head all the time.

Shit has been hard. I mean really hard and I get a post started in my head and then feel like Debbie Downer and like the pity party should really just be for one.

I made it through CHOC. I made it through what seems like much rougher times. I made it through 4 months in the ICU, multiple appointments a week, no real breaks, many more medications than there are right now, heart failure, foot braces, throw-ups, much worse right?
I get to go to yoga three times a week. I have hours a day to myself. Simon is stable and growing and thriving (sort of).

Still, I feel like shit is the hardest that it's ever been. I'm a little miserable right now. I'm feeling more alone than ever and like I should but I don't have much in my life right now that's feeding me.

I do laundry. I make phone calls to insurance companies, Regional Centers, summer camps, and therapist offices. I take art to get framed. I walk the dog. I'm even planning our trip back to CHOC with a side visit to happiest place on earth.

Simon is changing. He's interacting with language and play in ways that are brand new and so exciting. He's running faster and swimming like a young Michael Phelps.  He's READING! He can eat solids and purees and drink like a champ.

 He is also fighting with every fiber of being. He's fighting at meals. He's fighting sitting on the potty. He's fighting coming and going and getting dressed, undressed, staying, changing, waking, sleeping, you name it.

Mostly with me. Some with Jaime.  But mostly he saves it for me.

I'm tired. I'm tired of fighting to get almost every bite of food in him. I'm tired of working so hard and then going for our 2x a month weigh in and having him not have gained an ounce. I'm tired of the spectrum and having him ask me the same question 40 times while we're driving in the car. I'm tired of him choosing what he wants to do after a meal (as incentive to have him finish his last few bites) and then when I say "Great, when you finish your blahblahblah, then we can...." and having him say "Never!" and then choose something else that he wants and we go around again.

I'm tired if him being so smart and stubborn and feeling his world so out of his control that he just exerts that indomitable spirit that kept him alive in the ICU all over the fucking dining room table.

I'm tired of him refusing to eat for three meals in a row today and then going to hang with his Aunties and making me miss him.

I'm tired of feeling terrified that we're going to need to go back to tube feedings. Or, that we're not gonna go back because we're all really fucking stubborn and it will just continue to be this hard for who knows how long.

I'm tired of people telling me what a great job I'm doing.
I'm not. I yelled at my kid and this morning I made him choke because I wanted him to finish his fucking milk that had his stool softener it and put a cup to his lips and tipped it before he was ready. I did that.

I'm tired of being the stay at home mom. I'm tired of not 'working'. I miss people. I miss feeling good at something. I know I can load a mean machine full of dirty clothes but I fucking miss chaplaincy, social work, camp counselor-ing, anything where for even a moment I felt strong and secure in how I was being in service of.....

It doesn't help that I got two rejections from Chaplaincy programs on Friday night right after Jaime left for the weekend and Simon had a meltdown before fighting me tooth and nail on last snack.  Awesome.
It's not even as though I could have accepted one of them for next fall anyway because I can't see how a 40+ hour a week residency (with on-call days) with Simon starting ABA therapy, continuing on with OT, Speech Therapy, PT, and a regular school schedule that lets out at 2:45 every day except Wednesdays when it's 1:30, would work.
Still, it would have been nice to felt wanted. To felt like I was able or chosen for something else even if I couldn't do it next year. Rejection sucks. It sucks rusted buckets.

I want to be a chaplain. I think I was a good one for a few months last spring.
I want to go back to work. I want to earn money for this family. I want to stop feeling like................this.

I even tried to find a therapist to talk to and failed at that. I called three people that even remotely looked like someone I wanted to talk to and all three were unavailable for one reason or another.

So let's see...what are my successes in the last few months.....
I got a really good deal on a washer and dryer for the house because I went to two different Best Buys in one day. Grandma Esther would be proud. Then she might slap me gently across the face and tell me to snap out of it.
.....

ok, I know there are more but I can't come up with anything.  The pity party is in full swing right now. The goth band is playing and the bad food buffet is out.
Tomorrow is the Purim carnival at our synagogue and while Simon is going as Iron Man, I'm feeling bad for the black cloud costume I can't seem to take off.

Sorry for the sucky post.

Here are some photos.

 Working out with a new friend who's which Ninja

 Princess Elsa

 It may have been 2 sizes two small but he was gonna wear it dammit!

 To infinity....

 Getting ready for push off

The entire length of the pool, one breath!

 Ready to make Hamentaschen

 Checking for bad guys

 Playing Star Wars

 First Flamenco lesson (I wish)

 So much fun

Just lovin' it

Jealous.

 

And, it's all about perspective. 

It's not like anything stupendous happened today. 

No big check in the mail. No drastic change in our lives. 

But...we had a cardiology visit today. It was coming after a semi-rough weekend. Solo mom-ing it with Jaime away, two rough nights, and the beginnings of a cold for Simon. And we had a cardiology visit coming up. That means all those ‘maybes’ running around my head. From the mundane (maybe we'll get a parking spot close to the hospital this time), to the middle ground (maybe he'll be less combative during his echo and blood draw), to the grandiose (maybe this is the time when we'll hear about some drastic improvement in function).

It's just a little more exhausting than usual.

We check in and within 5 minutes are called for our EKG. Nice. Waiting sucks, even with Go Diego Go on the tv in the waiting room, not having to wait is always better than waiting.

Simon did so much better with the EKG than last time and it turned out that even with a size 2 tantrum (on a scale of 10) going on, his heart rate was the lowest that we've seen since we've been looking at heart rates. Pretty sweet.

He then greeted the Echo Tech by name (I really think he said ‘Sara’ as she walked in the door) and only worked a size 4 tantrum into his Echo with some nice quiet time in there as well. All in all the actual testing part of the appointment seemed to breeze by.

Again, no waiting back in the waiting room and after Simon stood on the scale like a big boy (instead of needing to lie down or sit on those baby scales) Rosenfeld was in our room within 10 minutes giving us the results.

So, his heart function isn't any different from last time but while the size of it hasn't changed, Simon has. He's clearly growing and his heart is not.

Take a minute and remember that Simon's heart got to be about 5 times the size it should have been when he was most symptomatic.

He's growing into his heart!! 

Yay!

While I was hoping to hear about some increase in his ejection or shortening fraction what HunkyPants said next was more than enough.

First, we had no blood draw.  I believe Rosenfeld's exact words were “BNP, ShmeeNP, look at him.”

and then...

"He's got the best energy of any of my patients with Cardiomyopathy. Why don't you come back in 4 months for your next appointment? He just looks so great."

 Remember it was only at the last visit that he said we should stretch our visits out from two months apart to three months. Now we're at 4 months?!! 

It's a nutty nutty mostly great but a little scary world. In my head “what do you mean you don't want to see my son who is in heart failure for 4 months?! What do they teach you at Harvard Med School?! This is where I feel the insanity that is cardiomyopathy. In the same breath he also said (to his med student) "there are kids with his exact heart function that are up on the floor (the ICU) dependent on the IV drug Milrinone." Aaah Milrinone. I remember you well. Thank you and may we never meet again.

Insane for sure, but it also keeps me present. Where Simon is at, with his heart, with his eating, with his gross motor, fine motor, speech, etc, etc...it's all where he's supposed to be in that given moment. There are things to be done, steps to be taken, things to be learned, challenges to be laid before him certainly, and...where we are, where I am as his mother/caretaker is right here. Each step is deliberate and I'm feeling more and more at peace with the pace.

There are times it's good to be a Taurus and the year of the Ox combined. 

And Simon is such a love. He still greets most strangers that pass him with an infectious "Hi!" and is able to move from his EKG and Echo with a lovely 'thank you' signed to each of his techs.  

I am just as excited about my son growing into the type of individual that can thank the person that just put him through an unpleasant but necessary procedure as I am about having my son grow into his enlarged and poorly beating-but-getting-stronger- heart. 

I am more often than not awed by him. I am more often than not awed by my family, immediate and extended. 

I'm feeling quite blessed right now. I took my son who is in heart failure for an EKG, Echo-cardiogram, and meeting with his Cardiac specialist and I feel blessed.

Check out the beginnings of one awesome breakdancer.  

http://www.youtube.com/watch?v=lPmLobkvINQ 

Omission

I can't believe that I forgot to include last weekend's kick-off activity. This was at Shabbat dinner at our dear dear friends Justyn, Kim, and Amira's house Friday evening.

http://www.youtube.com/watch?v=rT7H87AdF30

Please note the Pinafore AND board short combo. It's a look, riiight?

Check it

I have so much to write about the last week and a half. Hard times, fevers, hospitals, no hospitals, no sleep, no naps, rain, steroids, blah blah blah.

And yet, I can't think of a damn thing to say.

Life as we know it is over.

http://www.youtube.com/watch?v=NSUOyChSOFM

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!

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.

Giggle before the storm

Just had to share this with y'all since a) it's hysterical and b) we have a rough week ahead of us with a cardiology appointment tomorrow and a pediatrician appointment on Thursday.

http://www.youtube.com/watch?v=8feQWaL2LlQ

Water sports with Simon and his Auntie Dre.

Besides that it's been a nice week since I last wrote. Simon has been playing with drinking more and we seem to be back to a regular nap and nigh time schedule.

We're a couple of weeks into Homeopathy and just a few days into trying another supplement CoQ10. Unlikely we'll see anything drastically different from these two things on this upcoming echo cardiogram but like I've said before, i can't help but be engulfed with hope right before a visit.

Simon still doesn't seem to have any separation anxiety but is now showing some sign of stranger anxiety (really more like shyness) and some delightful new antics at bedtime including wiggling like a fresh caught salmon and a clear "i'm mad" new scream. It's relatively short lived but still...I can't help but wonder how I might be handling it differently if Simon didn't have Cardiomyopathy and I didn't have the image of that heart monitor from the ICU playing in my head.

Not so much whether or not I'd be more or less inclined to let him cry it out a little longer but more simply, my own reaction to it. I hate it in a way that is clearly born out of having a sick child. I feel it like a live wire has just been turned on in my body. I can't tease out what's a normal new mom response or a Mom of Simon who's a little different. Since I've never been either before that quandry will not be answered. I just know that I've never felt anything like it and it's hard to reconcile it with the slow moving, take a breath or three, type of *Ferdinand* that I've always felt myself to be.

You get extra points for knowing the Ferdinand reference :-)

Simon is still a love and a half.

Cross your fingers for no blood draw tomorrow...

xoxolaura

Simon doing his best Cindy Crawford impersonation complete with mole on lip

"What choo talkin' about Momma?!"

"Chocolate covered pretzels for dinner totally works for me!"

Or

"What I can't hear you?! I have a chocolate covered pretzel in my ear."

"Topped off with whipped cream?! I am soooo learning to eat!"

BNP- Big Nothing Probably

So, Simon's BNP is up. Not much but it's up. Last month we were at 366 and this month 547. Still significantly below 1000 but still up. HunkyPants not worried, in fact he was surprised that it wasn't up more (to which I replied "what the hell does that mean?!"- not out loud, just in my head).

Otherwise, we're just keeping our eyes on some watery stools and keepin' on, keeping on. Simon was a little stinker last night and since his mommies were out on a date stayed up way past his bedtime with his Mamaw (bedtime= 9:30!!) but isn't that what kids pull with the babysitter or grandparents? Staying up late and doing all sorts of things that they wouldn't normally do with the parents around?

Still, he did sleep till 7:30-ish and most exciting.....not a peep all night!! Not a wake up, not a throw up, not even a spit up.

He's been doing that with his feeding too. We're seeing a real decrease in vomiting so maybe that's why there's the increase in pooping. Gotta come out somewhere right? It's the just watery consistency as of late that's needing some attention. He's just a little off and for the first time in his life has some diaper rash. Add that to the hot weather (we're seeing some sweating- might be heat or heart associated) and some fussiness and Jaime and I are just keeping our eyes peeled a little more than usual. It's exhausting.

I don't want to go back to the hospital. Say that 3x times with your eyes closed and you pretty much have a good idea of how my late afternoon went.

After we had some great visitors earlier this afternoon, Simon was just a little out of sorts, with a little projectile vomit, more than a little fussiness, and exhaustion resulting in 5 minutes naps alternating with 5 minute crying jags.

Tonight he seemed mostly fine but just a little off.

Something's up but we're not sure what. We go from moment to moment.

Yay for the weekend and having two of us.

A huge shout out to Mamaw D for being around this morning and afternoon... Shimmy and I love you big time.

Famblee Photo

Simon and Joan's son Sommers practicing their breakdancing routine...I'm not kidding

Check them out.

http://www.youtube.com/watch?v=EJFqOK7Acac

Oh Loverboy!

So, Simon now knows how to butt heads AND make out. Laura has been working withhim on both and the fruits of her labor have finally paid off. What else could he possibly need to know to get through life?

Click here to see a video of his new talents

Simon goes for a Cardiology follow and a GI follow up tomorrow. So far the G-tube is working pretty well. He's definitely more interested in putting things in his mouth and even drank a few tiny sips from a sippy cup. I think we're going to have a LONG road ahead of us in terms of eating, but this is a great first start.

In other news, the estimate to fix the bumper from Laura's rearending? $2,500

The itemized cost of Laura's hospital stay? $80,000

I got one word for you. INSURANCE.

Can I get an amen?

I Knew I Felt At Home For Some Reason...

Okay, Shimmy woke up REALLY early this morning and I went on the CHO website to putz around while he played in his saucer.

Reading the "About Us" section, I found this:

In 1912, Mabel Weed and Bertha Wright, a nurse, founded Children's Hospital, then called the "Baby Hospital." Its first home was the stable of the old McElrath mansion. Today, with 191 licensed beds,Children's Hospital's medical center offers outstanding patient care,and also supports nationally recognized pediatric teaching andresearch. (http://www.childrenshospitaloakland.org/about/about_history.asp)

All my red flags went up about 2 women of that era doing a venture like this together with no mention of a husband so I typed in the two founders' names and the word "lesbian". Look what I found!

Bertha Wright (1876-1971), known as the West Coast's Lillian Wald and Jane Addams, pioneered public health nursing in California in the first decades of the twentieth century. Her life partner was social worker Mabel Weed. They lived together for over 40 years, adopting and raising three children and providing foster care for many more.
(http://www.glbtq.com/social-sciences/nursing,2.html

How awesome is that? I love it.

Had a pretty mellow day today. Went on a dog walk and on the way home, Simon was in a stellar mood and decided, after some prodding, to show me his teeth. He has a chapped upper lip which looks deceivingly like a tooth but you can see the two little nubbins on the bottom.

http://www.youtube.com/watch?v=NfQ1FHmL7wU

I tried a number of variations on the "Show Me Your..." command including one often heard during Mardi Gras. It brought chuckles from the front seat AND the car seat.

We had Alex and Jake from our birth group come over and we had a nice time. Roxie thought Jake was another puppy and tried to clean his ears:
http://www.youtube.com/watch?v=xP6zd_4YklI

Karen, Fred and Zuzu also came over and brought yummy Thanksgiving leftovers. It was very sweet.

Turns out MCT oil is not the source of all evil. Simon booted all over the place today even with no oil. Not quite as much as he has been, but MCT is not the lynchpin, evidently. Also, I never really thought I'd use San Pellegrino to flush nasty crud out of my baby's NG tube. Gross. Effective. Thank god for cases of it at Costco.

I have been remiss- weeks ago I promised one of our favorite nurses, Kathy, that I'd post a picture of her puppy Brutus on the site and ask for good thoughts for both of them. Brutus has cancer of the tongue, I believe, and will probably need to be put down soon :-( We're hoping for very sweet time until that point, a quick passing and comfort for Kathy when that day comes. She's had Brutus since he was an itty bitty puppy and I can only imagine how hard that is. Big love for Kathy and Brutus please!


p.s. yes, Kathy is that hot in person.

Laugh and whole world laughs with you

Here is one of the very funniest videos of Simon ever. Check out the tongue!
http://www.youtube.com/v/Fu_HuePtU_k


Still looking at going home the end of the week. Still a little freaked out that Simon's heart rate is about 10-20 points higher than it has been. Still really ready to get out of the hospital. We've started Regalin to get his upchucking under control (he didn't gain any weight between Friday and Monday) and hopefully get him really stable and in a good place before Friday. Fingers crossed, prayers sent out, visions of Simon home. Please.

Quote of the Day

Margaret, one of our nurses from the first few days in the ICU was working in the Annex today. She's been a nurse here for a long time and has actually trained some of our other nurses. She loves hanging with Mr Shimmy (even though she wasn't his nurse today) and was commenting on how far he's come. She was saying how he really is a miracle boy with everything that he's gone through. She also knows some of what I've gone through (with motorcycles and horses) and came up with a most unique title. She called me a Miracle Whore.

Let it sink in for a minute.

Miracle Whore. I like it.
It was on par with Sister Bernice (the Hospital Chaplain) coming by the other day (after Prop 8 passed and Shimmy got sick again just before we were supposed to go home). She came over as Simon and I were hanging on the chaise lounge (our fold out chair) and just looked at me and said "Dammit! Dammit to Hell." No 'hello', no 'how are you guys doing today' just that.

In other news Simon has cut two teeth now. The bottom two have busted through and he's deep into teething. He's also been happier than he's ever been and is clearly feeling good. It's a joy to see. He's more smiley and laughing at all sorts of different things. He's also doing an incredible job of getting himself to sleep in his crib. Most of the time.

This is Simon about 10 minutes into being quiet in his bed, looking over at me with a "I'm not asleep yet, I'm cute, but not asleep" glance.

His peripheral IV has lasted yet another day and they're still talking about sending us home Monday or Tuesday if it makes it till Sunday. I'm not talking to Simon about it.

We've contracted his feeds another 1/2 an hour and so far he hasn't thrown up. Yeee haw. We're at 2.5 hours on and 1.5 off. Today we went for a walk during one of his off times and it was amazing to just have him in the sling and be completely wireless. AND tonight's weight....7.14 kilos! That's 15.7 pounds. Back on the weight train. Yay!!

Love to all of you for keeping up with us (for 103 days!)

Oh yeah and here's the video of Simon after only being on IV fluids for 24 hours. I especially like the last few seconds where he's realized where the sweet taste is coming from. http://www.youtube.com/watch?v=NLO8bn9Dqis