August 17, 2011


 Hannah might be called slim (or Slim Cooley).   She's actually just a regular-sized young teenager. I've had many people ask me how I "keep" Hannah so slender.    
I don't.
She is the way she is.

To me, she's not all that slim compared to my other kids.  I'm used to kids who are on the 75th percentile for height and the 5th or 10th percentile for weight.  That works out to be tall and scrawny.  Too thin to fit into slim sized jeans without altering them.   That comes out to be 6'1" and 130 lbs.  Or a tall-size 1 or 3  in juniors.

So Hannah is just a regular, average weight kid. Her height and weight are at the same percentile: 75%.  She wears a girl's size 16.  She's taller than most of her typically developing peers, but she's taller than nearly everyone who has Down syndrome.  It is difficult to find clothes that fit her well, since she is long-waisted.  Her torso is quite long.  Bathing suits don't fit well.

Take a look at her with her cabin-mates from camp this summer:

 She's only 5'3", but she looks like a giant compared to the other girls (not to mention the counselors, who are flanking the girls)!  And she was the youngest in the cabin.

She is nearly finished with her height. She's only grown 1/4 inch in the past six months.  They say that a girl usually stops growing within 12-18 months of the onset of her menstrual cycle.

I can't take credit for her weight or her height. It's pure genetics. We don't eat the healthiest diet.  It might be healthier than most, but not by much.  Her favorite foods are carbs and proteins. She loves pasta and meat.  We used to call her a pastatarian, but she likes to say she's carnivorous. She will eat nearly any vegetable, but doesn't enjoy fruit very much. We use very few prepared foods, and do quite a bit of baking (bread, cookies, scones, muffins, etc). Her favorite lunch is either macaroni and cheese (sometimes homemade, sometimes doctored-up Kraft or Annie's), or it's a wrap with salami and cheese. Neither very healthy.

I know that vegetables can be tricky to get a kid to eat. When she was three or four we used the TalkTools idea of a "little plate" and a "big plate". We had portions of her meal that were cut into cubes that we would feed her on her back molars to get her to chew better. It was hard work for her, but she could see that the "big plate" had the rest of her dinner--food that she really liked and could eat any way she wanted to. We worked on chewing skills first, and then nutritional intake after. When she had mastered the chewing well enough to transfer it to her entire meal, we started using the "little plate" to introduce new foods or "less enthusiastic foods". She already knew that the "little plate" was non-negotiable. She had to clean that plate before she could get to the good stuff. That's how we started with salad. And broccoli. And fish (which is one of her favorites now!)

We stopped using the two-plate system a long time ago. Hannah will eat whatever is for dinner.  She has favorites, but she still will generally eat anything that comes her way. She doesn't like the stalks of broccoli.  She doesn't like spicy foods.

We have dinner out at least once a week, if not twice. We have a busy schedule, and I'm not one to plan ahead very much, so sometimes it's fast food (if it's lunch), or we're off to a real restaurant.Hannah enjoys Chinese, Thai, Vietnamese, Italian, Mexican, Japanese, and she loves a good cheeseburger. If we go somewhere that has a salad bar, she'll order that, but come back to the table with nothing green at all--it's all pasta salads, mushrooms, shredded cheese....

As far as energy output, we are not very active. We're a bunch of bookworms. If we do any kind of exercise, it's motivated by flab, weakness or embarrassment.

While Hannah's FAVORITE past time is watching DVDs, she also loves to be out and about. I'm all for her being out in the community and learning from someone else than ME. If you've been reading Shenanigans very much, you know how many outsourced activities she does .This fall she's signed up for:

Soccer (2x/week)
Art class
Tai Chi (2x/week)
Horseback riding.

We did have to drop theater this year due to scheduling issues. I wonder why?

I can't say that I've had much to do with Hannah's weight and stature.I think it's just what she was born with.  She's had vitamin supplements for a decade, and she's had probiotics to help her digest.She has no GI issues with constipation or otherwise. But I know other kids who have been on the same TNI approach and they are heavier, rounder.

It's totally possible that Hannah could have more significant weight gain as she gets older (like,  Right now she's perfect.  And later, she'll still be perfect.

August 9, 2011

Devastated again

I'm sorry to have bad news to bear.  My friend Tracy, mother of three, passed away yesterday from an aneurysm leaving her beloved Troy, her two precious "olders" and little "Jack", with Down syndrome.   The blogging world knows her as the author of My Little Stinkerie.

I first met Tracy when she emailed me two years ago, soon after she received Jack's prenatal diagnosis. She had read my blog and had a ton of questions and worries.   We had a flurry of emails, but finally decided it was easier to talk on the phone than it was to write.  We talked at odd times of the day, with the three-hour time difference between East and West coast, laughing most of the time.  My daughter Kate and I worked up a whole series of ridiculous name choices for this yet-to-be-born baby.  Of course, she and Troy didn't choose any of our suggestions, but chose to name him after a hero--one of the kings of Sparta.  They both had a myriad of nicknames for this feisty little guy--from Snake to Snorkis to Stinkerie.  

When Jack made his appearance, all the worries and doubts about Down syndrome she carried disappeared.  All there was left was love. Tracy was totally smitten by Jack.  She ooh-ed and aah-ed over every inch of that baby.  And though he might not admit it, Troy was captivated as well.  

Tracy was a mother who loved, loved, loved her children.   She advocated for each one, for each one had their own special way of learning.  She loved her doggies, and her beloved Troy.

Please pray for Tracy's family and close friends.