Archive | May, 2013

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.

Love,

Mama

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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?

Swallow: A Documentary

1 May

My sister recently sent me this short documentary about dysphagia which was produced by the National Foundation for Swallowing Disorders. It shares the story of 3 people of various ages who have different reasons for not being able to swallow.

I’ve got to say, I really relate to Elysa, the mother of 3.5 year old Rydr in this video. Hearing her talk about all of the therapy, the work of a feeding tube, the constant concern for swallow safety, and the “why did this happen to me, why did this happen to us” thoughts was like hearing someone read a page out of my diary. Parenting a little one with dysphagia is a tough road to walk, she’s 3 years ahead of me and it’s inspiring to see all of the progress they have made. Kids who have to hit all of the normal developmental milestones, and learn how to do instinctual things like swallowing are seriously tough and amazing.