Tuesday, November 18, 2008

Small side of tiny



One year into raising a special-needs child, we're realizing the worries never go away. Sometimes, they're more prominent than others. Sometimes, they rotate. But they're always lurking, ready to leap up, grab your lapel and say, "don't get so comfortable."

We're still not sure what to do about Hope's weight. She's about 9 pounds at 12 1/2 months and is stubbornly clinging to the 10-15 percentile in the CdLS growth chart. It's a chart that is heavily skewed toward small, so she is on the small side of tiny.

So far, we've erred toward caution and non-intervention because her height and weight are proportional. But the experimentation never stops. Eager to squeeze in a few more calories with every feeding, we've added coconut oil, butter, heavier formula, and myriad combinations in between. Our kitchen sometimes resembles a mad scientist's lab, with carefully calibrated concoctions prepared with blenders, heated, then cooled oil and syringes. This week, we're beginning to try to wean her onto Pediasure, a calorie-rich milk substitute that tastes a lot like rich, chocolatey Ovaltine.

Often, the experimentation works. Others, no. The frustration comes with the vicissitudes. For weeks, Hope will eat like a linebacker, devouring bottles and fruit with frightening relish. Then there are stretches like last week: Little interest. frequent spitups and tiny triumphs if she finishes half a bottle.

Few variables change to explain why she's just not digging her chow. So we fret and obsess. Is she constipated? Did we feed her too much chicken? Is she dehydrated? How much did that diaper weigh? Should we cut back on the oil, sacrificing a few calories in the hopes that she might make up for it by drinking more formula?

There may not be an easy answer. It's a common issue for those with CdLS. The metabolisms are lightning quick. The appetites come and go. The digestive systems are problematic.

Dr. Spitenup encourages the long view: Slow and steady gains, without getting caught up the daily fluctuations. But that's often easier said than done. So we ponder, second-guess and hope for the best.



Meanwhile, we're happily watching her blossom as a boom, boom, lickety-split player. We finally were able to capture the elusive prey at play on the exersaucer. Usually, she freezes the moment a camera emerges, but we got lucky.




11 comments:

Heidi @ GGIP said...

I guess I can relate to not be able to feel comfortable.

She is amazing with that exersaucer! Really. She's so fast!

Misty said...

she really is spinning around in that exersaucer isn't she?? looks as though that spinny ball is her fave LOL! LOVE IT!!

in a way..i know what you're going through. although mason us tube fed, we are having issues with not being able to increase the volume and trying so many different things to keep him growing. he hasn't gained in over a month.. but hasn't lost any either.. but it is a guessing game.. we are also going to start with the pediasure next month.

it is one worry after the other... and just when you think you've got it solved, something else comes up and messes it all up!

LOVE LOVE LOVE to watch her play!! cannot wait to see more videos!

beth said...

Great video - love Bigfoot. Boy, exersaucers have come a long way in 10 years. Matt's had about 4 playthings on it with no bells and whistles and we thought it was the coolest thing ever.

Anonymous said...

I want one of those exersaucers. Do they come with TV remotes, video game controllers and mounted cork guns?


-- Steve

Sandi said...

I just love these videos...the girl can really move!! She is so adorable.

I remember how frustrating the weight gain issue could be, but try not to worry too much (easier said than done, I know!)

cdls said...

Wow...I didn't realize 9 lbs at 12 months was on the small side of CdLS! Baylee was about 9 lbs at a year and since we didn't have the growth charts back then, I guess what we didn't know didn't bother us. I just got sick of explaining to people that no, she wasn't a premie and yes, she really was a year old. Now Baylee's a big old brut....and strong as an ox at 70lbs. She walked when she was barely 14 lbs soaking wet...just like a tiny doll. I don't think I'd worry too much...our kids have an amazing way of compensating for their small size. Hope is amazing in that exersaucer!

Rhonda said...

She may be on the small side size-wise, but she is on the large side of cuteness! She is adorable. I know it's hard not seeing growth like you think should be happening but just be patient. She will grow at her own pace. Sean was small for so long. He's still small for his age but now we have to worry about him eating too much and gaining weight because he won't be getting much taller. I always looked at it as a money saver - he got to wear his clothes at least through two seasons - sometimes three!

Jan said...

Have you thought of entering her in an Exersaucer Olympics?? She'd kick some serious B, no matter who she went up against. I guess I was born 60 years too soon -- way cool stuff for kids to play with nowadays! She is definitely the cutest ever.

Joel and Maureen said...

Thanks for all the notes. It's nice to hear some of these stories, especially about Baylee. She sure has sprouted! Good to know. We know we shouldn't get too caught up in weight, but, as someone said, it's easier said than done. And when the scale moves so slowly, it's easy to get frustrated. So all these notes are encouraging. Thanks.

Karen said...

I love the Exersaucer video...9 lbs or not, she can really make that thing move! Hope is so cute. Ben's Exersaucer is one of his favorite things.

therextras said...

I'll say! The video really shows her stuff! She does some nice movement and hand play. Great toy for her!

Might she need a booster in her high chair? Maybe just one inch....
Barbara