Monday, November 11, 2013

Samuel passed his test!

So much has happened with our family in the last year - so many posts I wish I would have written - but I just can't let this one go by... it could be a game changer :)

Samuel had a modified barium swallow study this past week... and he PASSED!!!  In other words, this test showed that he has a functional swallow!  Not perfect, a bit of residue left at the back of the tongue, but very functional.  This is huge.

Samuel has had a few of these tests in his life - three I think - but he's never been advanced enough in his eating to even swallow the barium fluid.  No barium = no results.  But this time, it worked, and results were good!

Background: Samuel is still 100% gtube fed.  Many factors play into this, including overcoming severe oral aversions from birth due to so many tubes and medical equipment.  In addition, since he's never eaten, his mouth doesn't really know what to do with food... how to chew, why to chew, how to move food around, etc.

We've been able to encourage him to eat, but with extreme caution.  Without a functional swallow, there's a very good chance Samuel would aspirate and fluid would enter his lungs (it would literally go down the wrong tube, ha!).  As you can imagine, for a very lung-impaired kiddo, this was terrifying.  There's also the paralyzed vocal chord, which doesn't necessarily play into why he hasn't eaten before, but it's a huge risk when eating.  Even if someone is a good eater, and understands the mechanics of it, and has the desire to eat, a paralyzed vocal chord can cause functional issues.

So what comes next... a new approach!  We have come a long way with the oral sensitivities, but there is still much to do.  In addition, he still needs to learn a few basic skills such as opening your mouth when presented a spoon, and lowering your tongue to accept the spoon are current goals.  Samuel has been licking lots of foods, every once in a while will accept a tiny amount of liquid, and sometimes he eats a pea-sized bite of yogurt.  For an actual feeding plan, we'll be starting from the basics - level 1 baby foods and liquids.  He'll still get a plate of whatever the other kids are having, just as he has for some time now, but the strong encouragement to eat will be more of the level 1 and liquids.  Samuel has a lot of learning to do...

Eating needs to be fun and something he wants to do!  At the same time, even when Samuel started expressing a small interest in foods, without knowing if he had a functional swallow we could only do so much.  And then of course you add in that Samuel doesn't understand the connection between hunger and eating - why would he?!  Without knowing Samuel wouldn't aspirate, we certainly weren't going to hold the gtube feeds and hope he ate more!

It's still a very slow process, but we are just thrilled to be moving on to a new journey!  Let's eat!

A few pics that have nothing to do with the post... expect they're all about food :)

Sneaking a cookie :) 
You can always tell when Samuel's done this because he leaves behind the licked evidence, ha!  
Maybe soon he'll actually eat the cookie!

Yes, that's a green pepper... another item Samuel stole off the counter.
He ran around the house biting it and saying "apple" - this boy needs to eat! 

George's first bite of sushi a new months back :)  California roll, he was so proud.

Another proud George moment, he ate an entire grilled zucchini... 
this after he told me he wouldn't try it, yes!

I don't seem to have any recent pics of Olivia eating, 
but I did have some of Olivia with food - that counts, right?!
Above, making a pizza at the Children's Museum in Phoenix :)

This time she's inspecting the food :)  
Olivia and a classmate look at coconut under the microscope in their science lab, too cute!