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Wednesday, March 7, 2012


Today we see the GI. Last night I told my wife Jill that we're just to get his opinion and realize that we're not going to change it. We think Alex (born three months premature 19 months ago) still weighs about 20 pounds. Nineteen, maybe. We see Dr. L., whose instructions we've ignored for so long that to go back and follow the instructions now would be an impossible backtrack. We're not using the feeding tube. We're sure Dr. L. will order us to. We will then refuse and have to find another doctor.

Jill and I have one goal at this meeting, and only one question which was recommended by one of Alex's therapists: What does he have to do to get rid of the feeding tube?

Gain weight, obviously. We feed him all he'll take – sweet potatoes, bananas, prunes, applesauce spiked with heavy cream, cereal and maple syrup, Pediasure and fortified babies' yogurt. It totals about 30 ounces a day. I've stopped counting. I have no clue how many ounces of Spam I had for lunch yesterday, how many milligrams of spaghetti pie I downed for dinner last night. Counting the ounces made me feel like Alex still belonged to the hospital.

In Dr. L.'s office, we unhitch Alex from the carriage. He takes off, crawling to  the receptionist's desk. Slap slap slap go his palms on the tile floor. I trail after him with the small oxygen tank. He crawls up to strangers and tries to crawl into the back hall of examination rooms. I go to remove his cannula.

"Don't do that!" Jill says. "I don't want him to burn calories. Ever."

He's still burning them, though, when Dr. L. appears. He has glasses, a gray goatee, a soft voice and light-blue eyes. A year ago, when other doctors wanted to do an even severer surgery on Alex, he was the only one who said we did the right thing by just getting the feeding tube.

We go to his office; all the grown-ups take a seat. Dr. L. asks me if I have a cold. I say I caught it from Alex. He asks if Alex has been retching, coughing, or choking? No, no, none. What is he eating? We tell him.

"All by mouth?" he asks. Jill answers most of the questions as Alex twists and scrambles in my arms. He needs a change; it takes three of us, a binkie, and a plastic toy. Then he's weighed. Remember that number, Dr. L. says, wrapping a tape measure around Alex's skull and tries to get Alex flat for a length measurement. Alex won't even lay flat to get a diaper change anymore. The measurements show that, since his last appointment eight weeks ago, Alex is shorter by about 10 percent. That would be like me waking up tomorrow and being 5'4". That's the kind of measurement you get when you try to measure a boy who moves the furniture.

Dr. L. puts pencil to graph, however, to draw a dot marking the spot of Alex's new weight. Strung together, the dots make a curve that flattens and is drawing farther and farther from the big blue shaded area marked "normal." Once dots on a graph start looking like that, doctors can do one of two things. Most will hold up the chart, hold up the pencil, and use the two props to let you have it. Or they can do something else.

Dr. L. lets a short silence linger before saying, "Well, you know as well as I what has to be done. What is preventing him from 
taking 35 or 36 ounces a day?"

I don't know. Alex just always turns away after an inscrutable and insufficient number of spoonloads and bubbles up the bottle.

"I don't mind him being a little thin, as long as his brain continues to grow," Dr. L. says. He used that phrase two appointments ago, to Jill's terror. He goes on to say that as Alex's metabolism increases, he will burn more energy and need more food. Won't Alex get hungrier as a consequence? I ask. "Not necessarily," Dr. L. says. "Boy, look at him. He reminds me of a perpetual motion mobile."

I listen to Dr. L. <I>Get to the point,<I> I think. We are to go home, feed him as much as possible, and check in with Dr. L. again in two weeks. Boy, we think, it pays to dread the worst!

That night, after Alex’s bath, before I can get the diaper on him, he urinates on the floor. Our disgusting little animal, our dear little son. I get a diaper on him and it seems loose. Then we feed him yogurt, applesauce with cream, bananas, and formula. He takes 29 ounces.

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism(both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s DigestAutism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
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