Happy Thanksgiving : one day late

Happy (belated) Thanksgiving !

So we are well on our way to start Jacob's tube wean. We have received the hunger induction plan, we have discussed final details with the therapist, we have our packing list, we have done the best we can to button up things at work.... as ready as we will ever be.

Ironically, yesterday... Thanksgiving... our national day of gluttony... is the day we started to reduce Jacob's food through the tube. It is a good thing in all sorts of ways that we hosted turkey day at our house. All the excitement, activity, and family fun dominated the day which helped make the small first day reduction in food go almost unnoticed.

The reduction will happen gradually over 5 days so that by the time we start the process on December 3, we will only be giving him 50% of what we normally do through the tube. Deep breath.

We can't imagine he will be very happy about this as we progress. We can only hope that the unhappy translates quickly to figuring out how to eat to solve the problem. Fingers crossed.

But nevertheless. Jacob had a wonderful Thanksgiving. Blessed to be surrounded by family and a house full of joy and more food than we could ever hope to eat in one sitting (even if he doesn't yet understand what a blessing that is).

Not to be robbed of turkey, cousin Jonah (with his Momma's help) made a turkey for Jacob. It has great multicolored clothes pins for feathers (hello fine motor skills practice! and practice with our colors!) and was a big hit.

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It was a great idea and an awesome turkey! Good therapy hidden in play... not to mention awesome handiwork of my precious amazing nephew. We will be taking it with us on our trip this week for sure!

But don't start thinking that's the only turkey Jacob. Next year, kiddo.... this is your bird...

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Foto Fabulous Friday

 

 

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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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Our signature look is baaaaaaaccckkkk!

We picked out new specs this week.... no small task considering the glasses place is only open on weekdays and only until 6 - totally convenient for working parents and a kid with a busy schedule, yeah-right. Also. I'm not sure you've noticed but the bridge of Jacob's nose is -well- nonexistent, which makes the proposition of proper fitting glasses an interesting one.

But anyhooo... Jacob of course brought all his personality to the process and voila'! Irresistible.

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Therapy. Jacob style.

In the course of your day, if you or someone you know reaches way outside their comfort zone to accomplish something hard.

Jacob would like to demonstrate the appropriate response...

Followed by applause, of course.

And repeat...

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Foto Fabulous Friday(ish)

Oh Halloween.

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Happy Halloween!!

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