Saturday, April 25, 2009

Take Two Placebos and Call Me...

This just in: stem cell treatment WORKS (to drive a parent batty).

My husband I and had promised each other weeks before our trip that we wouldn’t allow the placebo effect to set in once J.R. had received the stem cell treatment. If I had any delusions I could actually walk around without electron microscope strength glasses observing J.R.’s every last move, they were quickly tossed aside after J.R. yelled out “mommy, my boobies are getting wet in the pool” the night of his last treatment. Had J.R. noticed his boobies before? Did I really just write that last sentence?

Because I knew there was no possible way I wasn’t about to NOT park myself, pad and pen straight up J.R.’s rear, I tried my best to control the less psychotic influences in his life. I was not about to inform his teacher and therapists that we were seeking stem cell treatment; they were bound to see something in J.R. that was not really there if J.R. performed a classroom miracle (i.e., taking more than one obligatory bite of his lunch). To distract these professionals from noticing their tiny prodigy would be absent for three weeks, I told them we would be taking a dream vacation and bringing J.R. with us. Ok let’s face it, I’d be dreaming if I thought I would actually get any vacation for the next ten years, so I hadn’t stretched the truth all that much.

Of course as any “Kristi” laid out plan would proceed, the scheme had a few flaws. Number one I think I emailed the blog address to his ABA therapist by mistake. Oh yeah, hi Ms. Carolina; keep up the good work. I also realized that J.R. would only be spending about another month with his B-E-L-O-V-E-D Pre-K teacher. No stem cell parents have reported changes in their child in less than two months, so why would I keep this amazing experience from Ms. W?

It’s all good, because on the homefront the placebo effect is well, to quote 80’s rap, in “full effect.” To add to the fun, my husband and I have developed a “look” that we exchange every time we observe J.R. doing something “out of the ordinary”. Okay who am I kidding, the kid farts and the looks fly, which translate into “STOP THINKING WHAT I THINK YOU’RE THINKING WHICH ONLY STARTS ME THINKING…WAS IT THE STEM CELLS…? PARKAY? I CAN’T BELIEVE IT’S NOT BUTTER!”

We just can’t help ourselves. Put yourself in our shoes (Reef Sandals)…imagine purchasing a big ticket item on Ebay knowing that it may or may not turn out to be the Prada (oops I mean product) you were expecting. Oh yeah, and you sent the seller cash in the mail. Tell me you wouldn’t be all over your package delivery provider like white on rice!!!!!!!!!!!!!!!!* Okay I’m pretty sure that analogy made zero sense, so be sure to read the disclaimer below.

Dr. Seuss warned us; we’ve found ourselves in the Waiting Place. Do I make myself clear now? If not I have a reading assignment for you.

My point is that the placebo effect is impossible to control. Can we attribute any of J.R.’s following behaviors to the stem cell treatment? Who the freak knows. What I do know is what I’ve thought all along- J.R. has been involved in so many interventions, so we may never figure out if there’s that one magic bullet (or if it will ever hit him). We know we are just infinitely lucky we have the opportunity to try such treatments.

Ok here it goes- the Top 10 Things J.R. Has Done to Prompt The “Look”

10. He uses the word “another,” as in “Jack, find another car to play with.” Then again, he’s named his favorite Lightning McQueen car ‘Nother Car.

9. He learned how to ride a Razor scooter in 3 minutes flat. He’s got 6 gashes to prove it and tolerated a Band Aid (which we thought would stop the hemorrhaging) for a full 12 seconds (a new record).

8. He uses all the nicknames for his little brother that we use, understanding that they all mean “Jack.” “Tons of Fun” is not one of them, so we think that J.R. may be developing his sensitivity chip.

7. He says “cheese” and smiles for the camera. Need I remind you I recently paid a small fortune for a professional photographer to capture one of FIVE photos I own of J.R. making genuine eye contact (see blog pic). I can hear him half way down the block, on his Razor, calling out “cheese.” I hope he will soon figure out he has to remain in FRONT of the camera for the photo op to become an op.

6. He asks where his brother has gone, to mean "mom, get your head out of your ass and start parenting." Inevitably my two year old will wander off into the neighbor’s landscaping the minute I turn away; J.R. answers himself with a stock “into Bob’s bush,” but hey at least the kid finally acknowledges his brother’s existence!

5. He climbed to the VERY TOP of the Burger King playground habitrail. He has never done this. Jack followed him right up, instantly loaded his pants, and clogged the line causing me to have to weave MY sweaty self all the way to the top and rescue J.R. from certain death by noxious fumes. You should have heard the parents applaud.

4. He calms himself. We’ve longed for J.R. to develop coping mechanisms- his anxiety can be through the roof. Now he says things like “it’s okay, it’s all better, it’s gone, etc.”

3. As we speak J.R. is battling a temperature, and today he told us that he wanted to feel better. WOW!

2. He exceeded a professional’s expectations. Last week his ABA therapy supervisor observed him actually reading (vs. recalling from his freakish rote memory) 4th and 5th grade level words. My husband watched her jaw drop via closed circuit TV. Priceless. Actually, pricey but who's counting?

1. He told us what he did at school. Last Friday J.R. came home (in his $40 shirt) covered with silver paint. We are trying not to speak for J.R. or prompt his answers, so instead of saying “did you paint today?” my husband said “what did you do today?” J.R. quickly responded with “I painted an octopus at school today daddy.” Imagine my surprise when on Monday he came home with a silver octopus (which I am getting silver plated).

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*this scenario in no way, shape, or form resembles my experience trolling for Michael Kors bags or Highwayman paintings on a certain popular auction website.

Thursday, April 2, 2009

Oh The Places We've Been

Last night, Dr. Lara called our room and gave Tim an offer we just could not refuse. He was going to be administering Steve-O's PETRIFIED little girl a double dose of stem cells on Thursday so she would not have to return Friday. Were we interested in the same deal? I could barely make out the conversation and still I was signing an emphatic HELL YEAH!!!!!! from bed.

Not wanting to jump the gun, Tim asked if he and I could discuss the proposal first and give ICM an answer in the morning. Dr. L agreed that would be okay. Right away I informed Tim that my opinion did not count because my mind was clouded by the idea that if we finished the treatment on Thursday morning we could enter the pool a whole 24 hours earlier.

Doubling up on the regular stem cell dosage has already been done with some patients, and since J.R. had no adverse reaction to the first two injections, Dr. Lara thought it would be perfectly fine to combine days 3 & 4's doses. Tim and I feel the entire process is a complete leap of faith anyway, so we said "what the heck, let's do it." We were over the moon.

Besides J.R. having a bit of difficulty sitting DOUBLE the amount of time, the treatment went well. To be honest even though the injections couldn't possibly be causing J.R. any pain, I was done seeing him become upset. And after all was said and done J.R. high-fived the nurse, Steve-O, Steve-O's mom, and confidently walked right outside into the van telling everyone in his path that "it did not hurt"! The rest of the day's events involved tons of sunscreen, chlorine, and cokes.

J.R.'s favorite book (this month) is Dr. Seuss' Oh The Places You'll Go. Most of the time he reads at night with his dad, so I had really only mindlessly read him a few pages here and there. Ironically last night J.R. asked mommy to read. I had to hold back tears at its poignancy, encountered especially in these lines:

You can get so confused
that you'll start in to race
down long wiggle roads at a break-necking pace
and grind on for miles across weirdish wild space
headed, I fear, toward a most useless place.

The Waiting Place...

Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants,
or a wig with curls, or Another Chance.
Everyone is just waiting.

Parents who seek stem cell treatment say the hardest part is the waiting. Waiting for something to click. We hear it can be downright maddening, yet J.R.'s affection for this book has brought us some peace.

J.R. is always saying "NO! That's not for you," and now we know why. We thought he was just reminding himself out loud to not touch or do certain things. He's actually reciting the words that come next in the rhyme. They are:

NO!
That's not for you!
Somehow you'll escape
all that waiting and staying
You'll find the bright places
where Boom Bands are playing...

We can only pray that waiting will NOT be for him, and that he will be one of the lucky ones who will, according to Dr. Seuss, "succeed...98 and 3/4 percent guaranteed."

Tim and I have tried a lot of different types of interventions with J.R. as any parents would. Some will say that people like Dr. Lara and his staff have no more business practicing what they do than Dr. Seuss. Our solace lies in these lines (which just so happen to be J.R.'s favorite):

...be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
you're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!

Wednesday, April 1, 2009

Turtles & Squirrels & Iguanas...Oh My!

Today's treatment was at 10:30 a.m. and J.R. wasn't at ALL thrilled about it, but the best part is that it takes a total of five minutes.

Too busy blogging about our hotel (P.S. the toxic smell came from the complete renovation of our floor that was completed in a matter of 8 hours...they needed to impress the President of El Salvador), I went into little detail about J.R.'s actual treatment.

J.R.'s injections go as follows...

First he is given a a shot of saline to be sure the catheter is in its proper place. Next he is given two vials, back to back, of the stem cells. The amount seems small. Then one quick shot of heparin (a blood thinner) before a final push of saline to be sure those suckers don't clog in the line. The whole process takes five short (try describing them to J.R. as short) minutes.

The funniest part is that at the first treatment I had no idea how many injections he'd receive nor how long it would take to administer them, yet to distract J.R. I'd say "okay let's count" at the start of each.

"Oooooooooooone, twooooooooooo, thrrrrrrrrrreeeeeeeeeeee..." I counted slowly.

"Onetwothreefourfivesixseveneightnineten" J.R. counted OVER me and was on 10 before I hit 2. I just love that little boy.

After today's treatment we were off to our planned excursion to the Zoo which included a traditional Costa Rican lunch and a stop at a souvineer sweatshop (oops I meant factory). J.R.'s version of a traditional CR lunch was picked up on the way at El Burger King. To give you an idea of traffic, we could throw a rock at BK from the clinic, but after having to "serpentine" (which prompted lots of "look kids, Big Ben, Parliament jokes") it took 20 minutes before we had J.R.'s "cajita" (kidsmeal) in hand.

Our driver's name was Esteban, and Tim prompty calls him Steve then tells "Steve" that I speak Spanish. Great! I did NOT want this trip to be work! Interestingly enough I am encountering LOTS of people just like Esteban here in Costa Rica whose English is about it good as my Spanish. We end up having the greatest conversations! I can't tell you what great exchanges I've had, talking about what it's like to learn a foreign language and how difficult it is to retain without practice. Every person I spoke with is (happily) studying very hard, which is respectable I have to say.

Don't ever take a tour with us, because inevitably every tour guide we've used takes a pre-destination side trip to his home town and points out about 200 points of disinterest adding 50 minutes to the ride. Point in case: we left Kauai, Hawaii not knowing it was once a massive pineapple plantation but got to see where Lana kept her goats during the rainy season.

I really like Costa Rica. I can't stress enough how genuinely nice everyone is, and I honestly didn't mind seeing Esteban's elementary school, te prometo.

The traditional lunch was at a neat shack made to look authentic for tourists. The food looked and was, according to Tim y Esteban, very tasty. I simply ordered a batido de fresa because I had nervously downed J.R.'s BK fries on the trip over.

As for the Zoo...it was very lush and just J.R.'s pace. For my hometown friends, let's just say it's the Costa Rican version of Flamingo Gardens...just riddled with conservationist slogan-filled signs (oh yeah and cardboard cutouts of animals that may be asleep). I think Tim actually attempted to pet a two dimensional tapir.

The highlights included Tim and I nearly getting clipped by a Toucan (darker in color than Toucan Sam from what I saw), and J.R. coming an inch from getting his ass torn off by a peacock. As if this were not entertaining enough, an exit sign warned that it was not very eco-friendly to harvest turtle eggs for Viagra production. !Que divertido! (...o horror)

The Zoo is famous for its birds, but I swear more effort was put into providing a habitat for its turtles, squirrels (no I am not kidding) and (two) iguanas. I wanted to ask if I could help build the population by letting the zookeepers visit my BACK YARD! LOL!

I'm off to fight the VP of Chile for the last piece of sushi at the concierge spread. The bomb squad thinks J.R. is cute so I may have an in!

Peace!

K