Friday, September 28, 2012


Some recent gems...

"I see trouble!" (While playing with an ambulance)
"I love you, airplane." (I am still waiting to for him to say that to me.)
"Delicious!" (While getting a g-tube feed)
"I see taco truck!" (He really did see a taco truck, but how did he know what it was?!)
And my personal favorite, "I see a toilet, yes I do!!!" (No explanation required)

Wednesday, September 26, 2012

SMARDy Pants 2012 40 Mile Ride


The SMARDy Pants 2012 40 Mile Ride!!!

On October 20, 2012, we will hold the first annual SMARDy Pants Ride. This will be a low-key affair that just about anyone can complete. The route will begin at Lincoln Park in Los Altos and head up to the Pulgas Water Temple on Canada Road in Woodside. Returning to Lincoln Park will make for a pleasant 40 mile route for an important cause.

We would love to have you ride with us. The entry fee for the ride is $100 but this is expected to be fulfilled through your simple fundraising efforts on Fundly.  Recruit a few people to sponsor your ride you will be all set.  Click the "Become A Fundraiser" button to get started.

If you don't want to ride, you can simply donate.  If you can't donate show SMARD research your support by clicking the support button (it's free!) and spreading the word. 

The primary goal of this ride is to help raise money for SMARD research.  This year we will also be using a portion of funds raised to help Nate get a wheelchair accessible van.

Your support is appreciated so much.  Become a donor and/or supporter on Fundly and help us spread the word about Nate and SMARD.

Thanks for all your support and Ride on!

P.S. If you want to donate but you're shy, just click the ANONYMOUS button on the donation page.

SMARD research

SMARD is a life-threatening motor neuron disorder. Symptoms of SMARD are commonly seen within the first six months of life and many of these children will not live to see their first birthdays.

A life with SMARD means:

- Having little to no control over your legs and feet.
- Weak muscles throughout your body making it difficult to lift your arms, hold a crayon, or even raise your head.
- An inability to breathe due to a paralyzed diaphragm. Without a trach and ventilator a SMARD child would not be able to live.
- Deformed bone structure and pain especially without proper therapy.

But there is hope for these kids.  SMARD is the rarest of rare diseases so there is very little information about it out there, but the gene that causes SMARD has recently been discovered and treatments are being researched by a handful of doctors and scientists throughout the world.  The Jackson Lab is the only place in the US that we know of where significant SMARD research is happening. 

Earlier this year, a conference was held in the Netherlands that was the first of its kind focused on SMARD research. The fact that there was enough interest to have a dedicated meeting on SMARD is extremely exciting.  The conference established important relationships between the Jackson Lab and European researchers and they are going to start working together to speed up their research.

At the office at Jackson Lab.  They care a lot about these kids.  There's Nate on his bike!

Meet Dr. Cox and Dr. Soundararajan from the Jackson Lab.  They are giving us hope for a cure!  You can read more about them and their efforts here. 

Because of the rarity of this disease, nearly all of their research dollars are coming from friends and family of those affected. It would mean so much to our family and all of these kids fighting SMARD if you'd consider donating to the Jackson Lab.  You can easily do so here.

Below is a video made specifically for SMARD families to keep us informed about their research.  It's long and fairly specific but I'm posting it here in case any of you are interested/scientific geniuses. 

Tuesday, September 25, 2012

Nate as of Late

Lately, Nate has been...
...snuggling George...

...feeding a hungry caterpillar...

...learning how to use the camera...
...playing with Hailey's awesome felt board...

... and practicing different facial expressions (more on this later)...
He's a busy boy.

Fun with Pre-Literacy

Now that Nate can identify most letters of the alphabet, I'm attempting to teach him that there is a sound assigned to each letter.  This concept has not yet been grasped.

Mommy:  D.  Da-da-da-da-Daddy.
Nate:  Da-da-da-da-truck.
Mommy:  No, truck starts with T.  Ta-ta-ta-ta-truck.
Nate: Ta-ta-ta-ta-Grandpa.
Mommy:  Grandpa starts with G.  Ga-ga-ga-ga-Grandpa.
Nate:  Ga-ga-ga-ga-airplane!  Ga-ga-ga-ga-pumpkin!

All in due time.

Monday, September 24, 2012


The only color Nate ever seems to want to draw with these days is blue.  I honestly think it's because it's the hardest color to scrub off. 

Tuesday, September 18, 2012


Because Nate is not able to move around and explore his environment like other kids his age, he is considered at-risk for cognitive delay.  So, for the last year an "Early Interventionist" has come to our house once a week to play with Nate and teach him the ways of the world.  Her name is Feng and she is Nate's favorite "teacher". 
It has been fabulous having Feng come to our house, but we have decided it is time for Nate to venture out to her clinic to prepare for preschool (which he'll likely start in six months).  Nate is the only kid at the clinic while he's there. 
We call it "school" and Nate thinks it is the greatest thing that has ever happened to him.  There are so many toys and books Nate has never seen before.  There is therapy equipment that he actually enjoys using.  His favorites are the scooter board "airplane" and the "merry-go-round".
The "merry-go-round"
Puzzle time
Story time

Happy camper
As much as I hate having to get him out of the house and take him to school, it is totally worth it to see how much he loves it. 

Cousin Micah

Nate got to meet his brand new cousin Micah this weekend.  It may not have been love at first sight but they warmed up to each other pretty quick. 
This is Nate's first boy cousin on the Green side and he was excited about the idea of little Mikkamahkus (Micah Marcus) to play with.

There is nothing like a newborn to make your two-year-old seem gigantic.  Micah may be big for a newborn, but he is still SO tiny.  What a sweet and adorable baby he is.  Welcome to the family (and the world), Micah!

Saturday, September 15, 2012

Call Me Natey

A couple of days ago, Nate was hanging out on the couch while I got some work done on the computer.  Then out of the corner of my eye I saw his little head start to bob.  Then came some little whispers: "Pss pss pss met yooou, psss psss psss craaazy, psss psssss number, call maybe!!!" 

We may have listened to this song/watched this video one too many times this summer.

Thursday, September 6, 2012

Nate took very good care of George today by giving him food and medicine via his g-tube.

PS If you have trouble giving your kid his medicine, you should totally give him a g-tube.  Nate thinks getting medicine is hilarious and awesome.

PPS Yes that is Wild Wild West playing in the background, DJ Nate is a huge Will Smith fan.