Saturday, December 21, 2013

Scooter Board

Have you seen Nate's scooter board?  He has gotten so fast on this thing.  We take him off his vent and he cruises around Grandma's hardwood floors all day.  The other day he did it for an hour and a half straight. 

He also just developed a new move where he chases his own bum around in circles.

Thank you!

Thank you to everyone who participated in our hospital book drive!
Thanks to all of you we were able to donate over 120 Christmas books to children at SCVMC and LPCH.
Both hospitals were so grateful for the donations and we are grateful to you for supporting our little project.  We hope these books have brought just a bit of cheer to the kids who received them.
Nate went with when we took this batch to LPCH and he was very, very excited.  He always says "please bless all the little kids in the hospital" when he says his nightly prayers.  I am happy that he is learning that a big part of Christmas is giving to those who are having a hard time. 
Thank you for your kindness and support.  Merry Christmas!

Saturday, December 14, 2013

Guess who Nate got to meet yesterday?

Last year Nate met Santa but he was a bit overwhelmed.  He didn't cry but he did not want to get closer.

This year Nate was very excited to meet him and tell him about how much he wanted Optimus Prime for Christmas.  I think he was a bit in shock about meeting Santa.  He looked like he was star stuck the whole time but he was definitely happy about it.

As a reward for meeting the big guy Nate and Callie got candy canes which they were apparently very proud of.

Nathaniel has been getting more and more anxious about doing things lately.  We are not sure why but it's getting harder and harder for him to leave his very small comfort zone and I was pretty sure he would have at least a mildly negative reaction to Santa once he got close but it was a Christmas miracle.

I think it helped that Nate had the support of his cousins Callie, Samantha and Micah.  Callie and Nate were headbutting and punching each other before hand to psyche each other up. 

I am not joking. They were literally bonking their foreheads together and laughing and then punching each other in the stomachs.  Although by the time we got a picture they had calmed it down a bit.  It was kind of delightful.

Wednesday, November 13, 2013

Holiday Book Drive

Scott and I feel like we have been the recipients of so much kindness and generosity during the last few years and we have been trying to think of something we could do to "give back" this Christmas.  We decided we'd like to deliver some holiday books to the kids at the hospital where Nate spent four months as a toddler.  Then we thought, why not give the rest of you a chance to donate a book or two so that all the kids there will be able to get a book?  So, we're starting a holiday book drive!
We never had to spend Christmas at the hospital, but we did spend a couple of other holidays there and those were particularly hard days.  These children in the hospital are going through so much and their families' lives have been turned completely upside down.  Many of them don't know if their kids are going to live or die.  Imagine being stuck in the hospital during the holiday season when everyone in the "outside world" is enjoying lights and parties and picking out a tree and all of the other wonderful things that come with the holiday season.  Sounds pretty crushing to me.

We were given a few nice gifts from random donors while Nate was in the hospital and I can say honestly that they made a difference in the hospital experience for us.  So, I want to make sure every kid at Santa Clara Valley Medical Center can get a book from us this year to make their Christmas a tiny bit brighter.
I'll be accepting donation of new holiday books until December 1st.  They can be for any age from 1-12, although they tend to have more toddler and young school children admitted.  I'm focusing on mostly Christmas books, but it would be nice to have some "wintery" books too, if there are children who don't celebrate Christmas.
You can give books to me anytime before December 1st.  Or, if you prefer, you can order online and have them shipped to me.  Email me at to get the address.
If we get enough books, which I hope we will, I'd like to take some to Lucile Packard Children's Hospital as well.  Happy Book Shopping!

Friday, November 1, 2013

ON PRESCHOOL - Tiny Tots, Friend or Foe

Well, a lot of things have happened since the last time we last chatted.  The biggest is Nathaniel started school.  That's right, we're hoping the age-old childhood temptation to eat glue will get Nate to start eating again.  We weren't really sure how it would go but knew we needed to get Nate more out in the world. 

Thankfully, he loves going to Tiny Tots for the most part.  He loves to feed the pet turtle, ride his wheelchair in a circle with the kids on their bikes, participate in Zoophonics (which is a thing apparently) and provide a useful podium for kids to rest on during circle time.  His vent is the perfect height for a weary child to rest on whilst sitting.

He's had a little bit of a hard time with school lately though.  He got a cold about 3 weeks ago and that means weeks of no sleep for any of us, which dramatically affects his mood and desire to leave the house. 

Snack time has been a good opportunity for Nate to feel enough social pressure to try foods.  He gets the snacks everyone else does and will try them frequently....then spit them out.  Well, Nate's version of spitting which is opening his mouth and hoping the food will hop out or the stream of drool will carry the crumbs out. 

Since school has started he has been much more talkative, imaginative and outgoing.  We're happy we have such a great preschool so close to us.

From your friendly neighborhood Nate:

You'll have to speak up, I'm on my car phone.

Thursday, September 12, 2013

Colin and Megan's Wedding

Last month Nate's uncle Colin got married.  He donned his most dapper duds and even put a little gel in his hair for the occasion.
Nate kept trying to hug Micah but it was hard.
Then he tried to kiss him and it was even harder.
The happy couple.
I feel like a total outsider in this picture.  Nate was so into hugging Scott.
He loves his new auntie Megan.
We got to meet his soon-to-be-uncle, too.  Nate was not too sure about him.  Love those shifty eyes.
Nate was totally psyched about going to the "wedding party". 
Happy day with my two favorite boys in the world.

Monday, September 2, 2013


This year was Nate's first time in Tahoe, made possible by our new van. 
This picture does not do it justice but there was a lot of stuff in our van.  90% of it was Nate's.
My entire family goes for a week every year.  This year our family count is up to 30 people, so it's a pretty big party.  We decided to do four days there since traveling is really hard for us, and we had a wedding to get back to.  It was a lot of hard work hauling Nate around everywhere but it was a blast.
He loved getting to see so much of his cousins.

One of his favorite things was throwing rocks in the lake.  He just thought it was fantastic.  He got pretty decent at it, too.

The last day we got to go on a boat.  This is what Nate had been anticipating ever since we told him we were going on this vacation, and it did not disappoint.  He was so excited and just kept wanting Grandpa to go faster.
Tahoe is my happy place.  I'm so glad Nate got to experience it this year.

Wednesday, August 14, 2013

The Smardy Duo

*The Smardy Duo has already sold out but will be restocked mid-September,
so stay tuned!*

A few months ago, my sister mentioned to me that she had a coworker at Red Cross who had heard about Nate and wanted to do something to help.  Her coworker owns a nail polish business on the side and decided to create a couple of custom colors in Nate's honor.

I thought it was an awesome idea, but it wasn't until I checked out her Instagram that I realized how amazing this girl really is.  Over 16,000 followers?!  She is the real deal in the nail polish biz!  Polished by KPT sells out regularly since their colors are amazing and all of the polishes are handcrafted, custom blended, cruelty-free, and free of the big 3 nasty chemicals that usually go into polishes.  So I feel especially cool that she has just introduced these new colors just for Nate!

The first color is called Bleu Cruiser and represents Nate cruising through his battle with SMARD.  Blue is also Nate's favorite color. :)

The next color is Glowing Smardy, which represents hope in a dark place.  This stuff glows in the dark and I LOVE it!

They are priced at $9-10 a bottle and 50% of the proceeds will go straight to Nate's fund at the DCipher Group to be used for medical expenses, therapy equipment, and donations to SMARD research.

Polishes can be ordered here.  Get some for yourself and everyone you know!  Christmas is coming soon, right? :) 

You can also help by spreading the word about these polishes on your Facebook, blog, Instagram, Twitter, or whatever the kids are using these days to tell people to about awesome stuff.

HUGE thanks are in order for KPT herself, too!  Be sure to check out her other polishes while you're shopping her site!

Wednesday, August 7, 2013

Photo Dump

Scott mercifully took over blogging duties for me last week, which was very sweet, but now my conscience is pricked and I feel like I have some major catching up to do. 
So, without further ado, I present to you Nate's entire summer.

lots of cousin time
lots of pool time
lots of seeing what sinks and floats.  fascinating stuff.
painting, and then getting a bath
Storytime with Mom.  I love that we can both fit in his new bed!

Learning to climb up and down his ramp
Waking up with 4-dimensional hair (and no pants, apparently)
Getting up close and personal with the construction equipment downtown
More cousin time
Visiting the temple
"Helping" me make dinner.  Why is there a loader in my casserole?
Lots of semi-annual checkups with all of his specialists.  He only shows up for the stickers.
Playing at Grandma's "beach"
Riding Caltrain
Being obsessed with human anatomy
Playing "guess my expression"
Helping me water the patio
Even more cousin time
Watching plane take off at the airport
Running through the sprinklers

Nate climbed these stairs all by himself for the first time in his life!
twice-weekly therapy
new baby cousin Lydia