Joe and the Human Genome

Thanks to the blogosphere (and Facebookosphere?) I’ve gotten to know some other parents of children with “mystery syndromes” like Joe’s. We’re all trying to figure out what to expect, and how to introduce our kids to the world when there isn’t a two-word explanation for their differences.

One of these mamas is Dana at Uncommon Sense. Her daughter, Maya, was born a few weeks before Joe and has a lot of the same delays as him. Maya’s parents have been through a lot of the same specialist visits that we have, and also came home with more questions than answers.

Now, they’ve signed Maya up for a genome-mapping program. This video tells a little more about their participation, and this article explains the variety of questions that can be answered with genome mapping.

It’s fascinating stuff, even if you don’t have a little one who could be affected! I’ll be following their story for sure.

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A Day in the Life

The online forum for my local mothers’ group has a feature in which members are invited to share their day in photos. My day is pretty Joe-heavy, so here it is for all his fans …

Like most days, my Tuesday began around 6:30 or 7 with this (I hope he will always wake up this happy):

After a good snuggle, he took to his throne to await breakfast (that’s a Napoleon Dynamite doll he’s whipping around there):

Posing with Dada, who’s about to leave for the day:

A little time to play and then … dressed for school!

Here comes the bus to take him away …

Now my commute down the hall for work …

Here’s an arty shot of what I’m working on to make it seem more interesting:

I’m also printing address labels so we can finally send these.
(I knew I wouldn’t make a Christmas deadline, so we did New Year’s cards instead. Probably should have done Valentine’s cards. Don’t you judge me.)

And now, an additional way to procrastinate

Noon. Lunch break! (PB&J, Diet Coke and a good magazine)

Time to get Joe from school …

Off to therapy!

With his speech therapist at 2 p.m. …

And his physical therapist at 3 p.m. …

Back home to play (he loves that mirror — what an ego!)

Dada comes home and feeds Joe (I neglected to photograph that part, just imagine it).

I have a meeting tonight, so I’m going to Panera for a solo dinner while I read my notes:

To City Hall for a Citizen Planning Committee meeting:

Back home, where Patrick is cuddled up to my sister-wife:

Ooh, a new Parenthood is on!

A quick check of the little dude:

And lights out, a little later than I meant to.

Happy New Year!

We are having a lazy day around here. Patrick and I had our usual New Year’s Eve celebration (PJs, champagne, resolutions and celebrity death predictions) … and managed to stay awake until almost 2 a.m.!

Tomorrow, Joe goes back to school after a very relaxing winter break. Patrick’s folks weren’t able to make it down from New York for Christmas, so we  crashed the party at my parents’ house in North Carolina instead. Joe had a good time with his cousins, who are always so sweet with him.

His big gift this year was an iPad! It’s an awful lot of money to spend on a 3-year-old (I hope he doesn’t expect us to make a habit of that!) but his speech and occupational therapists use one with him and highly recommended us having one at home. I loaded it with the apps they suggested, but what he seems to love most is the camera:

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He could stare at himself all day.

Other news in Joe’s world:

  1. He dances! We have caught him bouncing and bopping his head to some of his favorite tunes, and he seems especially fond of the “Contemporary Bollywood” station on Pandora. Adorable.
  2. He’s eating like a champ! He still make us do all the work, but the variety of stuff he’s consuming has gone way up. Marshmallows are a new favorite.
  3. He makes messes! This is not something most parents get excited about, but it’s a huge developmental milestone for Joe. When you leave the living room for a few minutes, you come back to this:

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Here’s to a new year full of more fun surprises from this kid. What did we ever do for fun before him?!