1-2-3 Blastoff

All systems go!  Heath can now add rocketeering to his list of recent milestones.  Here he is moving at warp speed toward an attractive interplanetary destination....

Several small steps for Heath, another giant leap toward upright locomotion! 

In the spirit of inching toward bigger things, we've been doing a lot of food chaining around here lately.  Heath's therapist Gay taught us about food chaining, a clever and compassionate way to help kids add unfamiliar tastes and textures to their diet.  By slowly adding smidges of new foods to "safe" ones, kids can allow their tastes to develop gradually before determining whether they do or don't accept the new food on its own.

At Gay's suggestion, we started food chaining when Heath first became an eater but was still turned off by milk.  We began by adding 20 mls. of milk to his bottle of water (for really sensitive kids, you might start with as little as 5 mls!).  No problem.  The next day 40 mls.  Looking good!  Then 80 mls, and so on.  It took ten days for Heath to accept a bottle of pure milk, and he hasn't looked back since.  Pretty sweet!

Now we are chaining new proteins, veggies, and fruits into Heath's favorite meals.   Fortunately, he is pretty courageous about new tastes and sensations and doesn't get offended if we add too much of something he doesn't like or isn't used to yet.  Some kids can lose their sense of security if one of their "safe" foods is adulterated with "icky" stuff, but so far we've had no hard feelings.

Heath will eat just about anything that is mixed into a bit of black sesame cereal or spread on a cracker.  With fish, we started out finely chopping a sole fillet in the mini-Cuisinart and mixing these fish crumbs into his cereal.  Delicious!  Once he was familiar with the taste, he then started eating teeny-tiny flakes of breaded, pan-fried sole.  Now, he eats fish and chips down on the Pier with everybody else!

 

Greek honey-vanilla yogurt recently became a favorite food.  My buddy Beth suggested letting Heath dip his yogurt-covered hand in Rice Krispies, making a yummy, snap-crackly "glove" to nibble on.  Fun!!  Next we pureed strawberry and banana into the yogurt (he munches on strawberries but often spits out the pieces), while leaving bigger and bigger chunks in the smoothie for him to practice on.  Now we can add new fruits like mango, papaya, kiwi, etc., which might look a little daunting presented on their own. 

We're also chaining chicken (he has gone from crumbs to taking shreds off my plate to munching a McNugget), green veg (which goes down fine mixed with potato, but still not in big amounts; in cereal it's A-OK), and the grimace-inducing multivitamin drops recommended by the dietician.  These make his cereal smell like a hideous Victorian liver tonic, but amazingly, he doesn't seem to care!  

Here is Heath's daily menu this week:

Breakfast: One packet of Black sesame cereal blended with half of a chopped-up, hard-boiled egg and half-and-half.

Snack:  Fruit smoothie made with Greek yogurt, along with 1/2 cup Rice Krispies or Life cereal

Lunch:  Cheese or sunflower butter sandwich with applesauce or jam

Snack:  Pumpkin empanada, potato pie, or cinnamon toast with cream cheese

Dinner:  Chicken in black bean cereal, fish, refried beans or homemade mac 'n' cheese.   A veggie side: mashed, cheesy potato, mashed sweet potato with cream cheese or maple syrup, Spinach Littles or Broccoli Littles. 

Dessert:  Maple arrowroot cookie with chocolate peanut butter or a piece of dark chocolate.  Inexplicably, he still doesn't like ice cream (?!?).

Heath is eating like a champ and close to gaining back all the weight he lost during a recent illness and heat wave.  Once he stabilizes at his pre-illness weight, his pediatrician Dr. Heather will be comfortable with our removing his button at home, a fairly simple process.  Though we are already tube-free in practice, becoming tube-free in body is a moment that can't come soon enough. 

Today, when Heath was examining his tummy after a weigh-in, I asked him whether he liked his button.  His face went slightly scrunchy, meaning "Mmmm, not exactly." 

"Do you want it off?" I asked. 

He nodded.

It was all I could do not to go get the necessary stuff and liberate his tummy once and for all.  We shared a few moments of mutual reflection on the AMT Mini Classic gastrostomy button, a brilliant and often lifesaving device which extends 1.2 centimeters into Heath's stomach cavity, where it is held in place by a small, water-filled balloon.  I can empty the balloon with a 5 ml. syringe through a tiny exterior port, allowing me to withdraw the whole apparatus with just a brief zing of pain.  A clean white gauze would then be placed over the stoma, which would begin to close up immediately on its own as I gave my brave boy a comforting snuggle.  Instead, I suggested we go play in the living room.  Heath lit up, his mind temporarily diverted from that niggling little bit of plastic.  Off we went to roll trains over a wooden bridge at top speed, which never fails to delight him. 

Sometimes it's tough to know if we're making the right choices for our little guy.  I'm lucky that Dr. Heather will support whatever we decide with regard to removing his button.  I know Heath would be fine if we took the button out now, since he has survived a high fever without needing it and continued to drink normally while sick and eat about one-third his normal intake. 

Friends tell us that a hardcore flu can dehydrate any kid to the point where they could need an IV for a couple hours.  Is keeping the button in worth avoiding a possible ER trip weeks or months in the future?  Or are the psychological and physical benefits of removing it now greater than this peace of mind?  Benefits like allowing Heath to play comfortably on his tummy, being able to roughhouse for the first time without fear of a painful yank, and being able to undress him without his getting a self-protective look in his eye.  Being able to look at and hold our son for the first time without seeing tubes or wires or a chunky piece of plastic and silicone with numbers printed on it protruding from his milky-white abdomen.  

Can you tell?  I want it out.  I want to turn the page and have the hyper-medicalized chapter of our lives, and Heath's body, be over forever.  But I respect Dr. Heather's opinion and am grateful that she trusted us throughout the strange process of intensive tube weaning.  At the rate he's going, it won't be very many days until Heath gains back the final four ounces and has a nice cushion to draw upon if (err, when) his weight drops again due to illness.  What I am truly grateful for is that, in our hearts, we know he's out of the woods.  He eats better than most kids, with more gusto than most people.  He will gain and lose like a regular child.  And soon he'll have a run-of-the-mill belly, which we can hug and squeeze and rub and kiss like never before!

Matthew, who I've written about recently, is doing great as a newly minted eater!  His mom Judy reports that despite some trouble sleeping, he seems happier and more confident now that he is making his own eating choices and no longer vomiting.  Apparently, Matthew is standing up to his big brother more often and they are even tussling over snacks!  Look out, Brandon -- your kid brother knows what he wants!  Despite never having been an eater, Matthew is managing to chew and swallow anything and everything.  His out-of-the-blue oral-motor skills have amazed even Markus!  We are so proud of Matthew and overjoyed that he decided to make the leap. 

Wishing everyone a great weekend and lots of late-summer fun.

Comments

[melissa aka equidae]

your boy doesn't eat ice cream...mine doesn't eat any type of sweets apart for a packet of crips LOL he makes a face over choc, cake, biscuits etc (though recently started tasting them again and accepting like tiny amounts). As for weight gain he hasnt gained any since March he is so active - even though sometimes he eats a plate of pasta as big as mine! Enjoy your late summer to- here the heat is super hot and we are just going at the sea and looking up crabs :)

[Abeer]

I liked his expedition on the roller and I can see that he is ready to hit the ground running inshallah.. I feel it is coming up soon that Heath will start making baby steps upright movement!

Your pic is beautiful and I can give you three reasons for saying so: first, you and Heath are beautiful, secondly, the happiness that is evident on your and Heath's faces says a lot, and finally, the background with the water and the blue sky are so peaceful..
This pic looks like a postcard

love and prayers.

Abeer

[daphna]

I am so proud of everything Heath has accomplished! And how about the feat of getting all of the syringes and tubing out of the house too, besides the actual button? That will be so nice! I think we have three huge boxes of medical supplies under our dining room table, one drawer full, and a drying rack of syringes and bottles we use to measure BD. It has taken over our apartment!

[Daria]

Perhaps Heath is inching his way to Missoula?! :) I'm so excited for both of you to lose all the plastic!