Heavy

Oh no. Ryan is gaining weight.

Again.

I just called our pediatrician’s office to schedule a physical exam for Ryan. I inquired as to when he was there last for a physical and what his weight and height were.

“Date of appointment: October 20, 2020. His height was 5 feet 11 inches. His weight was 137 pounds.”

Before you gasp at how skinny Ryan was, let me tell you this: He was born with low muscle tone. AKA “Hypotonia.” Which means he had less muscle than a typical newborn baby. This translates to reduced muscle strength and the muscle’s ability to activate.

This is why Ryan did not cry his whole first year of life, except maybe for 5-10 seconds, after I lovingly pushed him out of my body on June 27, 2003.
This is why Ryan couldn’t suck or take a bottle his first year of life and needed a feeding tube.

This is why Ryan did not walk independently until he was 3 years old.

Despite being on growth hormone shots nightly since he was 10 weeks old, Ryan struggled to reach his feeding, fine motor and gross motor milestones.

He was THAT low tone.

So he grew up skinny. Very skinny. Almost appearing “abnormally skinny.”
I remember that one his past teachers thought I did not feed him enough.

“Could he at least have a full sandwich for lunch?” he asked.

When you read about Prader-Willi syndrome, you read about this crazy double whammy that affects our kiddos:

They do not feel full EVER and they have low metabolism.

They want to eat all the time AND they must be on a calorie-restricted diet. It just seems mean!  If they do not have a careful or even strict diet, they can become mildly or morbidly obese, which comes with more medical issues.

Ryan stayed skinny. Not because I counted calories. Not because he was on a special diet. Not because I was super strict.

He seemed to have the family’s high metabolism, despite his genetic disorder.

I was VERY careful.

I stuck to a “food schedule” like I had been trained through PWS conferences.

He almost NEVER got seconds.

He once in a while got treats.

And yet, he did eat junk food and pizza from time to time.

I had/have it written into his IEP at school that I must be notified anytime there is extra food in the classroom. In high school I provided locks for the kitchen that was a part of the classroom.

He hardly ever took anyone else’s food, most of his school life, thank God above.

He never gained an abnormal amount of weight.

PHEW!

And because of that, I did not weigh him

weekly or monthly.

And then…

Over the last two years he has gained 40 pounds. Forty. Yikes.

Last Spring when I bought him some nice pants for a photo shoot with me, I could not find his usual 32 inch waisted pants from Old Navy. I bought the 34 x 34 and said to myself, “this is fine, we don’t tuck his shirts in, anyways.”

Low and behold, when he tried them on, he totally filled them out. I noticed a little squish in his abdomen area.

Hmmmmm….I observed. Ryan has a man body now. Thicker legs, filled out a little in shoulders and arms. Still low muscle tone, no definition. Just a little thicker.

18 months ago, his growth hormone dose was reduced to a “maintenance dose” since his growth plates had closed and there was no more need for a high dose. Right away we did not notice any changes.

Now we see the changes.

Is that why he has gained so much weight?

Is it because he is two inches taller?

Is it the natural growth into a man-like body?

Is it because he is sneaking more food?

Is it because now his metabolism is really low?

Is it because…????????

If Ryan were neurotypical, I would not ask a single question above.
It just wouldn’t matter.

And yet, in the world of PWS, we must pause and wonder and analyze.

His weight cannot keep going up at the trajectory it has been.

I told the family.

I told our respite sitters.

I told our teen sitter.

I told the team at his transition program.

We MUST be vigilant about the locked kitchen.

We must be stricter about his diet.

Less carbs, more veggies.

Less cereal or oatmeal for breakfast, more eggs and greens.

We must NOT allow him to negotiate his meals into higher calorie meals.

We must not let him get a drink out if we get take out or take him to a restaurant. (One-on-one only, of course. We never go out to eat as a family.)

We must…we must…

Are you exhausted yet, because I am.

I already have lived with a vigilance in caring for Ryan.

And now I must be more, more, more.

WHY?

Because if he ends up obese, then he goes on a very strict diet and exercise plan.

Because I don’t want him to get diabetes.

Because I don’t want to begin to hate food as if it were the enemy. (Honestly, sometimes I do.)

Ryan sat on the floor of the kitchen as I explained to him that I needed to be more careful with his diet. Having this conversation is like entering shark-infested waters. He did start to protest and get upset. I got more firm and insistent that I needed to take care of him in this way. That it could be dangerous if he gained another 40 pounds. AND THEN I WOULD HAVE TO BE CRAZY STRICT and we would never eat out again. NEVER have sweets again. NEVER have…

He settled. He seemed to accept it. Especially as I told him that everyone in the family knows this. Every one of our sitters knows this. Everyone wants to protect him.

“This is part of me taking good care of you and your Prader-Willi syndrome.”

“Okay…Mom.”

Sigh…this PWS life is just so…heavy.

(Note: this picture is from 7 months ago. He was definitely much thinner.)