Common ground.

Food is our common ground, a universal experience. ~ James Beard

Here in Jacob's world we are gearing up for a big deal. Generally speaking, Jacob is no more or less interested in food than he was a year ago. This is good and bad. Good because he still is mildly interested and hasn't developed any overt disdain for what seems to be a meaningless activity to him. Bad in that it is still a meaningless activity for him. Well, or meaningful to the extent it's a bit of a game with mom and dad and nothing more.

 

Within the last several months, a few things have happened...

1. Jacob was cleared by his swallow specialist to enter a feeding clinic/program - with the assessment that while he doesn't have strong eating skills, he is swallowing safely.
2. Jacob's parents interviewed several feeding programs, spoke to other parents, consulted with therapists, soaked in a lot of information from the interwebs, thought long and hard about what might work best for Jacob specifically ...and chose a program.
3. The selected program did a thorough evaluation of Jacob's records, Jacob, and us and determined that they agree he is a good candidate for their program.

So here is the skinny. The process is called a tube wean. It is an intense 7-10 day therapy program, the goal of which is to teach him to eat by mouth and to be weaned off the tube.

We are scheduled to do this in early December, less than a month away. We will be spending most of our time in a rental house in a cute little old town in Virginia. Replicating the home environment... a kitchen, a dining room, family eating together, etc. are all things very important to the core philosophies of the program - hence why we will be in a house and not in a clinic. We will have a team of therapists working with us the entire time. This team will be coordinating closely with Jacob's doctors here at home as well (that coordination, in fact, has already started).

There is a lot of research and therapy approach philosophy blah, blah, blah but all boiled down.... we are going to slowly stop feeding him through the tube... in a controlled environment... with the support of therapists... and introduce food, often and in a variety of ways... to push Jacob to make the connection that....

• That uncomfortable feeling that sometimes happens = hunger.
• The putting stuff in your mouth activity = eating.
• Eating fixes hunger.
• Eating makes us feel good.
• Enough eating.... sustains us.
• In more ways than one.

That's the scoop.

It would be unauthentic to finish the post there as if that's all there is to say about that. Our anxiety as it approaches would beg to differ. We are both excited and terrified. Jacob needs to learn how to eat. Eating is such a fundamental part of the human experience. He can do it, we know he can. We just have to get him there. (Excited!) At the same time. If you didn't catch it in the description above, we are about to intentionally stop feeding our child - who doesn't know how to feed himself. (Terrified!)

So. The first week and a half of December. Prayers, happy thoughts, emails with pictures of kitties hanging from a branch with the saying 'Hang in There!' emblazened.... all will be very much appreciated.

And chances are, given his track record, he will likely do better than we will and be teaching us a thing or two.

We will try to post as many updates as possible during the wean. All to include charming happy pictures of Jacob and tired frazzled pictures of his entourage covered in food.

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