Dear TigerOne: You are 8 Months Old

19 Jul

Dear TigerOne,

I am behind in this process. You are in actuality 8.5 months old at this point, and it feels like we have lived a year of adventures and milestones in the past two weeks. We covered an awful lot of ground in your 7th month though! Here are the highlights.

We had a visit with a group called The Blind Babies Foundation. While you definitely aren’t blind, you do have nystagmus. So, Blind Babies taught us some exercises that we can do to help you strengthen your eye muscles, and they gave us some fun toys and this amazing quilt! Can we talk about this quilt? It has about every texture possible sewn into it on one side, a total sensory wonderland. On the other side it is all black so that we can put objects on it to help you focus on them. So brilliant. Big thanks to whomever made this and donated to Project Linus, so that Blind Babies could give it to us.

Coltrane received the most amazing multi-sensory quilt today from the Blind Babies Foundation (he's not blind, but does have a nystagmus). It's soft, shiny, corduroy, flannel, linen, quilted, crinkly, silky, netted, furry, lacy, multi-layered, ruffled, ro

Your sister, Olive, feels very strongly that the changing pad belongs to her. There has been some sibling rivalry in the house. The struggle continues. Cc: @cinemaone #siblingrivalry #territoryrights

You ate a twizzler in occupational therapy. Well, you mouthed a twizzler. The choices here were a twizzler or a slim jim so I think I made the right choice. You are making such strides with eating purees that we are prepping you to eat harder foods by practicing your bilateral tongue movements. You nailed it. Sugar can be a great motivational tool. We continue to work on liquids, slow going on that front. One day!

Practicing lateral tongue movements in #occupationaltherapy. The options were a twizzler or Slim Jim. I think we chose well.

Laundry hijinks. Pretty sure you were thinking “Are you forreal, Mom?” To which I replied, “Yes monkey footed boy, I am in fact forreal.”

"Mom, are you for real?" #laundrytime #thiskidmakesthebestfaces

Some Moms and I read an article about a Book Club for babies and we decided that we needed to start one of our very own. We read “Brown Bear, Brown Bear, What Do You See?” and were pretty impressed by the number of variations that folks turned up with. Not pictured: “Panda Bear, Panda Bear, What Do You See?”

So many bear books. Not pictured: Panda Bear, What Do You See? #ericcarle #babybookclub #babygram

It was our family’s FIRST FATHER’S DAY! What a milestone. You have a truly wonderful Papa. He works hard to provide for us, and has really taken the challenges that have come with taking care of you in stride. We are lucky that he is here to be such a smart, tough and loving role model for you.

Wishing a happy first Father's Day to this amazing man. I couldn't have asked for a better person to be sharing this adventure with. ❤

We celebrated Father’s Day by taking you on your first swim at the YMCA. Oh my goodness, you LOVED it! You were born to be a fish.

Took #tigerone swimming for the first time. So much fun! The kid is a natural. #familyfun #swimmingbaby

We went on a road trip to Mount Shasta for a wedding. We got to put on fancy clothes. Look how handsome you are in your first tuxedo! Feeling formal.

When we got home from our road trip I noticed that your first teeth were soon to come. Those tooth buds were looking so tender and ready to pop!

Happy to be home and showing off the #toothbuds he sprouted while we were away. #babyteeth #epiclashes #tigerone #putabirdonit

Something pretty historic happened this month. The supreme court ruled part of the Defense of Marriage Act unconstitutional, allowing a lower court ruling to stand that struck down California’s Proposition 8 ballot initiative, which defines marriage as between one man and one woman. This is progress, son. It does my heart good to know that you are growing up in a place that will honor your right to love whomever you choose.

The ruling occurred the Friday before SF’s gay pride weekend, and the city was a pulsing with more excitement, joy, and pride than usual. We got to march in the parade with the Kaiser contingent and had a pretty wonderful time. We put noise canceling ear muff on you to drown out all the ruckus and all of the rainbows, flags, balloons and floats were right up your ally. I love that our little family got to be a part of such a historic time!

Pretty much an excellent day. #sfpride #sfprideparade

Parade route #selfie with my    little. #sfpride #sfprideparade #babysfirstpride #babybanz

That’s all of the 7th month. Summer is in full swing though, and the fun won’t stop! I am so loving having adventures with you.




Home Sweet Home

15 Jul


Since last I posted:

We attended a wedding in Mount Shasta, California
We road tripped 10 hours each way to Eugene, Oregon
We flew to Minneapolis, Minnesota for the JSRDF conference

Somewhere in all that, TigerOne had the stomach flu, sprouted his first 4 teeth, and developed a fascination with giving the thumbs up.

It’s been a wild, wonderful few weeks. I have so much to share.

But first? I need a nap.

Dear TigerOne: You are 7 Months Old

11 Jun

Dear TigerOne,

The merry month of May was busy, mister!

Mr. Blue Eyes is 7 months old today.

Your half birthday and your Dad’s actual birthday are one day apart, which is pretty cool. We celebrated both by heading to the horse races with friends and then having yummy Indian food. I was holding you in the carrier the whole time so I didn’t get to snap a photo at the races, but here are the two of you being cute in the yard.

This arugula looks suspicious.

There was cake too! It was either addressed to “Mr. Papa” or “Mr. Potato”…

Señor Papa

Then it was your first Cinco de Mayo. We didn’t do much to celebrate, but given that you are half Mexican I felt it was important to document this day with a photo.

Baby's first Cinco de Mayo

We bit the bullet and upgraded you from the “baby in a bucket” seat, to a big kid car seat. The downside of this is that you have nowhere to sit at a restaurant and that I have to wake you to bring you inside when you fall asleep on car rides, which is every car ride. Oh, well. You will soon be strong enough for a restaurant high chair, and you love the increased room and visibility of your new chair.

The new big kid car seat is a hit!

You continue to be more and more interested in the world around you. Suddenly books have taken on a whole new dimension and they are fascinating! Yay for books!

AM #tummytime with Fuzzy Bee & Friends. Such #focus & #determination

We celebrated my first Mother’s Day by going to a garden party at Annie’s Annuals, and then to a craft fair at Jack London Square complete with a photo both and rubber chicken. Then we rounded things out with some lunch at Cato’s. It was quite a wonderful day. Your Dad said that he tried to let you plan something fun, but your party planning skills are pretty weak at this point. He went all out though and built a sweet little dinning patio for me with some furniture and a giant umbrella. Good save, Pops! Our little work-in-progress yard is shaping up nicely for some summer time fun. Now we’ve just got to get some grass growing.

mothers day Mother's Day Portrait #chickenbombed

The biggest event of the month by far was your first surgery and a weekend hospital stay. We removed your very last NG tube early on Friday morning. Then you had a quick procedure to put your g-tube in. I was a mess while you were in the in the O.R. but of course everything went smoothly.

My little #toughguy in pre-op. #tigerone

The worst part of the whole ordeal was the 36 hour fast you had to endure. We spent one of our longest nights together while I sang you lullabies and tried to help you forget how miserably hungry you were. On Saturday afternoon you got to eat and by Sunday we were home with your new tube in place. You’ve been showing off your adorable naked cheeks ever since!

These naked cheeks are HOME!

Your sleeping habits completely tanked after the hospital. Suddenly there was lots of fussing before bed and waking up throughout the night. It was no fun. So I launched a napping campaign to try to get you on to a schedule. I also started introducing some lovies to your sleeping routines and it turns out you do in fact love them. You have been cuddling up a storm at night with the frog blankie that your Grandma gave you. You also really dig scrunching your homemade taggie blankie over your face at nap time, I have to move it after you’ve fallen asleep. It’s really fun to see you bonding with things.


After about a week of terrorizing our sleep, things simmered down a little and it turns out that all of that disrupted sleep resulted in some pretty excellent developmental progress. Why do you babies insist on losing your minds when you gain new skills? Can you try to tone that down a little? Sheesh. At least the craziness had a payoff of more reaching, grabbing, and the major achievement — rolling! I discovered you could do this when you rolled yourself off of the bed… From here on out you will be surrounded by a pillow fortress on the bed at all times.

Onward to the eight month mark, tough guy!


We Are Going to MSP!

4 Jun

20130603-215731.jpgOh my goodness, YOU GUYS! A mere 6 hours after launching our fundraising campaign, we are fully funded! TigerOne and I are going to the 2013 JSRDF Conference in MSP!!! I am feeling extremely exclamatory!!!!! THANK YOU, THANK YOU, THANK YOU. My family is extremely humbled and overwhelmed by your generosity.

Please note that anything donated beyond our goal will be given to the Joubert Syndrome & Related Disorders Foundation so that they can keep on doing the wonderful work that they do. The online campaign will stay open until after we have the benefit show next month. It’s going to be a fun party!

Looking forward to keeping you all updated on our adventure to the Land of 10,000 Lakes.

Send TigerOne to MSP

3 Jun

Hi friends! I’ve launched a fundraising campaign to take TigerOne to the Joubert Syndrome & Related Disorders Foundation 2013 conference in Minneapolis next month. I’m making jam! I’m mailing postcards! It’s fun times! Please click the image below for more details.


Dear TigerOne: You are 6 Months Old

6 May

Dear TigerOne,

Half a year, already? It’s all going by so fast! One moment you were swimming in your 0-3 month clothes, and now I am stocking up on 12-18 month duds. You are in the mid-seventy percentiles for head and weight, and in the high nineties for height. If you keep growing at this rate you are going to need to get a job and buy your own clothes. I just can’t keep up.

Things are more fun now than when you would just sleep for 20 hours a day. You are a smiley, giggly little dude with dazzling blue eyes. You have a wonderful listening face, it’s very serious and thoughtful when a song or sound appeals to you. You like Reggae, Raffi, and Fela Kuti when it’s time to get excited, and rain forest white noise and cello music when it’s time to mellow out. You are starting to really enjoy story time, but bath time remains your favorite time of day. You love looking at bright lights, our collection of coconut shell masks, ceiling fans, Mardi Gras beads and out of windows. All things considered, I think you’ve got pretty well-rounded interests for a 6 month old.

In your fifth month:

We planted a garden! Ok, you slept under an umbrella while I did all the dirty work.

My first raised bed!  Coltrane is really impressed. #babygardener #squarefootgardening #sfg #letsgrowsomefood

No teeth yet, but you just wanna nom nom nom. Perhaps they are coming soon?
Welcome to my afternoon. #humanteethingtoy

Warm weather has come! Picnics with friends and summer adventuring abounds.
These dudes are down with springtime. #calemartin #coltranesirius
Summer fun

You are rocking the solids so hard that we have upgraded to stage 2 purées. You seem to like everything I give you, except for peas and humus.
Good, clean, messy fun. #omnomnom

You got approved for services in the Early Start Program, which is great news! You wore your little man shoes to your first meeting at the Regional Center, way to dazzle ’em with style, kid.

Big meeting today. Coltrane wore his little man shoes.

And right now, things that light up, BLOW YOUR MIND!

This mind blowing effects of things that light up.

Way to have made it on this earth for a whole half-year, little champ. It is so fun to watch you experience a world full of firsts.



1 World, 1 Diagnosis

2 May
JS Map

Concept by Elizabeth Walker Joshi, designed by Ross at LTL Prints

This is a graphic that was created for the 2013 Joubert Syndrome conference taking place this summer. The idea of this project is to show that Joubert Syndrome can affect children in any part of the world, of any culture or ethnic background. Look at all of these sweet faces! A whole map filled with rare and wonderful kids. Can you spot the tiny TigerOne in blue?