"Hans & Franz, we need you!"

Hans & Franz - SNL

​Seriously. Remember SNL's brainless bodybuilding dynamic duo Hans & Franz? Their famous tagline was, "We are here to pump you up!" Well bring it on Hans & Franz...bring it on!

Today was Jerry's follow-up with the GI doctor. He hasn't seen her for three weeks. We have been anxiously awaiting the secret of the scale, the big reveal. Makes me think of The Biggest Loser contestants at the end of each episode. Only what we have been praying for is their biggest nightmare. Weight gain.

Did he gain weight? Is he gaining enough that the NJ tube can finally be removed...37 days after it was first placed there? Will he have to go to school with it in?

The verdict? HE LOST 1 POUND! No, I am not joking. But I am pretty sure that I personally found the pound that he lost, along with several others that I would be glad to give back to him at any time...because that's just the kind of selfless mom I am. ;)

There is no explanation. We feed the child whenever he is hungry whatever he wants to eat in addition to the Pediasure he gets through his NJ tube. Granted, he is not eating much orally, very little in fact. But he says he is not hungry or feels nauseous after he does.

So what now? Here is the new plan:

• The home health supplies store is sending us (along with more Pediasure and feeding bags because we let our supply dwindle thinking this was almost over) a tasteless, odorless nutritional supplement called DuoCal. It is a powdered substance that we are to mix into anything he eats orally and will give him double the calorie intake with each dosage. Of course, we will have to use our mad secret ninja skills to keep him from seeing us put this in his food because, if he does, he will assure us that he can taste it in there and then refuse to eat it. Grrrr! And when they say tasteless and odorless, I doubt they have market-study tested this theory with a panel of autistic kids who can taste the color yellow and feel air on a breezeless summer Florida day. Really. 
• We also need to make him drink 1 packet of Carnation Instant Breakfast in 8-ounces of whole milk every day.​
• We are increasing the Pediasure in the NJ tube from 85-ml's per hour to 90, which by the way means getting up more frequently at night to refill his feeding bag. Joy.
• On September 1st, we have a small bowel follow-through at St. Joseph's as an outpatient. Doesn't that sound lovely? Small bowel follow-through?Sounds like an adventure for the Magic School Bus' Ms. Frizzle. This was that test where they put the barium liquid into his feeding tube and then took x-rays at 15-minute and 30-minute intervals to track its progression. It was the test that finally diagnosed the SMA Syndrome. It's time to see if those fat pads that diminished to cause the SMA to begin with are rebuilding themselves at all yet. Again, I have spare fat pads the boy can have! I will share!
• Lastly, the NJ tube needs to be changed our for hygienic purposes and to give his right nostril a break from the obstruction. I am waiting for St. Joseph's to phone to schedule that procedure and he will likely have to be sedated again for it since the tube is not simply going into his stomach, but directly into his small intestine.

We go back to the GI doctor on September 26th for our next follow-up and the results of the SBFT test. I am both annoyed and relieved truth be told. I was hoping that Jerry would have his tube out for the start of school in two days. He has been sensitive to people staring at him lately...and these are kids. On the other hand, I didn't want them to remove the tube too soon and then he have a relapse and face another possible hospital stay.

In the meantime, I am treating this monster like the piece of furniture it has become in our home. Today, I actually dusted it.

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