The Crunchy and the Smooth

Bam! Bam! Bam!

OK, maybe this isn't as miraculous as a hip healing on Youtube, but H-man blew my mind today with his not-quite-explainable walking progress.  On Friday he was nowhere near kicking the butt he kicks in this video.

How did he learn to hold onto the handles like that in three days?  Usually he pulls at least one arm up near his body for security.  Anyway, thanks to Gay, we got to take that contraption home on loan so Heath can start training up to emulate his favorite football players.  I set up the mirror in front of him so he could see himself walking and he smiled SO BIG.  We're on a roll!  (Pun intended.)

By the way, this conversation gets repeated many times a day:

"Heath, where's Gerald Ford?"

(While pointing to Ford on his presidential placemat) "Football."

"That's right, he's holding a football."

(Points at TV) "Football."

"Yep, you watch football on TV."

"Dada."

"You watch it with Dada? Touchdown!!??""

(Emphatic nodding, maniacal grins.)

That's all for today -- just happy and grateful.  Bam! Bam! Bam!

Stepping Stones

Big day!  This morning we visited a place called Rehab Without Walls, recommended by Heath's physiatrist, to see about scheduling an intensive three-week block of therapy for him in January.  The daily, two-hour sessions would be aimed at helping Heath reach a specific physical goal.  I think if we asked Heath what he most wants to work on, the answer would be a loud and clear, "Walk! Walk! Walk!"  So, our goal will be to help get him going in some type of assistive walker.  First we tried him out in this thing, called a gait trainer....

No problem, there!  This thing might be helpful for him to do some mall-walking workouts to build muscle, but it's too easy to be his main set of wheels.  By January, we hope that finding some stability in a posterior walker will be a reachable goal.  Here he is taking a couple of tentative steps with a helping hand from Hunter.

 

Heath was clearly having a ball in this place, which was filled with trampolines, harnesses, weighted pulleys, wheeled contraptions, bodysuits full of resistance bands, and millions of toys and games to make boot camp as motivating as possible.  We met a three- or four-year old boy who used to rely on a walker and is now walking independently.  It was hugely inspiring to think, "That's gonna be Heath!"

In other news, we had an absolutely fantastic Halloween.  We reunited with a few of Heath's tube weaning comrades, all of whom are either eating independently or just getting some supplementary fluid through the tube now.  We love you, little eaters!!  Check out Matthew in the back who is dressed as a hamburger! :-)

 

Heath was terribly excited to go trick-or-treating and even said "Thank you!" in sign language.  He went as a park ranger....

And Daddy went as J.R. Ewing.  Looking good, fellas!

*

Heath has received three wonderful gifts recently and we are so grateful.

Big thanks go to Grandpa Ed, who got the bright idea to make Heath a set of parallel bars.  These will be great practice for developing grip and balance he can use in the walker!  Right now he's getting comfortable standing in them while he watches football.

 

And my mom picked out this wonderful art set, which has brushes with easy-to-hold handles.  Thanks Grandma!  I'm sure you'll be getting some original paintings very soon!  

(Heath's first sentence was "Art up!"  Meaning, "Dad, check out all that great ART I did, which is UP on the wall!")

Finally, Food Face was a present from Uncle Brooks, and Heath loves to giggle at his daily makeovers.

In other food news, Mama has been gaga over The Sneaky Chef!  OMG!!  This lady deserves an award for service to humanity. Her cookbooks are full of creative ways to get super-healthy foods into kids' meals.  So far, I've wowed Heath with brownies containing spinach and blueberries, easy-to-chew meatballs full of yams and carrots, and a "Sneakwich," made from flattened, crustless wheat bread with healthy fillings hidden inside and the edges crimped with a fork.  My skills at pureeing foods (for tube feeding purposes) are coming in handy again as I learn how to cook and bake with veggie, fruit, and bean purees that slip clandestinely into yummy, fun-looking foods.  I can't recommend The Sneaky Chef highly enough to parents of new eaters or kids with a limited repertoire of "safe" foods.  You just might figure out how to make those foods a whole lot healthier!  OK, pitch over.  I'm going to go help myself to a Brainy Brownie....

Have a wonderful weekend everyone!

Up! Up! Up!

Since Heath got his button out, it seems we've been catapulted into the future.  Lately, I have the sensation I'm watching a time-lapse film of a seed sprouting and spreading its shoots in the open air, growing each second into a bigger, mightier something.  I look back at photos taken just a few months ago and realize we are in a whole new world. 

We used to dream about what life would be like when Heath would eat big plates of food like other kids,  when he would regain the weight he lost during the wean, when he would have nothing but smooth tummy where that plastic bump used to be.  Now all those things have come true!  It hasn't made life perfect, but it has made it astronomically better, especially for Heath.  I have to take a moment every day to remember how things used to be and thank heaven for so many things we now enjoy that used to be pipe dreams.  Living and eating like a normal family is something we'll always appreciate that much more!

Heath is starting to really understand food.  He's pulled carrots from the ground at the Children's Playgarden, seen chickens and their eggs at our friend Dan's little farm, and he relishes our time in the kitchen preparing dinner after picking out tasty morsels at the grocery.  We try to let him help with whatever tasks he can do.

Heath gets to make our salad, carefully placing greens in the bowl, sometimes leaf by leaf, then cheese, nuts and cherry tomatoes.  He watches closely as butter sizzles, ingredients are rinsed and chopped, and colors and smells transform in the pan and travel to the dinner table.  He peers through the oven window as things rise and turn golden.  Foods that look intimidating on his plate like edamame or tomato become intriguing in the laboratory of the kitchen, where he's likely to sink his teeth into anything. 

All this has made me realize that Heath's long journey to culinary sophistication is a lesson to take heart from.  Goals he is now working toward, like walking and becoming more dextrous, can seem distant but they are actually coming closer each day.  They might not come as quickly as they do for other kids, but when they do we will celebrate and appreciate them all the more.  Knowing how far Heath has come already makes it easy to see how much further he will go.

Last week we met with a senior physiatrist at Seattle Children's Hospital, an M.D. specialized in physical rehabilitation.  She was a kind, funny, straightforward person who made Heath laugh and didn't stand on ceremony -- the kind of doctor I've come to appreciate.  She said that although Heath meets the criteria for a diagnosis of mild cerebral palsy, he will be FINE.  Fine!  That he will do normal things, like play soccer.  Soccer! (Gasps of exhileration at the prospect of soccer momdom!)  That though his handwriting won't be the tidiest, he will do just fine with computers.  (Computers? He does just fine changing the settings on my laptop!)  That his life will be full of normal kid stuff, just like it already is.  It was great news, and news we mostly already knew.  It will be Heath's hard work that makes those wonderful things possible and, as we learned from tube weaning, the right helpers will appear, success will build on success and his determination, smarts, and character will pave the way.  Will I always be a little prouder of him than I would be otherwise?  You bet I will. 

We've known from the very beginning that Heath's motor skills were impacted by injury to certain areas of his brain.   So having a diagnosis doesn't really change anything.  It's a relief (but also not a surprise) to know for sure that he is only mildly affected and that neuroplastic healing continues.  The important thing is that, as far as Heath is concerned, all is well.  And in our minds, we somehow lucked out and got the best baby in creation.  And in our wonderful family and community, Heath is seen and celebrated as an ordinary little boy, learning his way around and enjoying almost every minute of it.  I won't say I haven't fought my way past a lot of anxiety (much of it irrational) regarding Heath's health and happiness over the past year and a half, and I am grateful to those of you who have listened patiently and advised me wisely during these rough patches.  These days my heart is resting easy and I don't have a shred of doubt that Heath will continue to enjoy life to the utmost, sharing his gifts of patience, humor and insight along the way. 

In other news, Heath is having a vocabulary explosion!  At last count, he was saying over 60 words.  Today at preschool during bubble time, he kept shouting "Up! Up! Bubbas, bubbas, bubbas! Up!"

He also has an eerie fascination with the presidents. 

 

(Note to self:  Fill out Heath's concept of U.S. history with a homemade placemat featuring Sacajawea, Elizabeth Cady Stanton and Oprah!)

We are eagerly anticipating a fantastic Halloween weekend.  Grandma and Grandpa Montgomery are arriving tomorrow!  Peanut and I are going out on the town to see David Sedaris.  And Heath will be dressing up as a national park ranger (the Teletubbie costume was too terrifying) and attending his very first Halloween party with neighborhood friends. 

Wishing everyone a spooky good time and clear skies for trick-or-treating!

Button-Free Since October 3!!

Goodbye button!!

That's Heath tossing the g-tube across the living room about two minutes after we removed it at home on Sunday.  All I can say is that he is soooooo happy to have it out.  Some kids get very attached to their buttons, which become part of their body image, and they worry about having them removed.  Not Heath.  On Sunday, I asked him a few times if he wanted to take his button "off" when Daddy got home, and got nothing but energetic nodding and "Let's do it now!" enthusiasm. 

That evening, we laid Heath down on the sofa pillows, gave him Mr. Bear to snuggle, and told him what we were going to do.  He was calm, cried for about 30 seconds after we withdrew it, then got curious and examined the button in the palm of his hand -- then hucked it as far as he could!  We let him throw it about ten times.  He seemed to be celebrating his liberation!

Having his button out is a real plus since Heath's favorite new sport is pillow diving...

 

This must feel great on a brand-new, plastic-free tummy! 

I'm just as elated as he is that we are finally at the end of the tube feeding road.  The nutritionist agrees that his diet is just fine and he's getting plenty of everything.  Since taking the button out, he seems to be eating even more, and faster.  Maybe because he no longer has a water-filled balloon the size of a gobstopper in his stomach, holding the button in place?  Who knows, but he sure loves his vittles. He goes nuts when it's time to buy more of his favorites at the grocery store -- here he is snuggling Snap, Crackle, and Pop.

And picking out a top-shelf banana.

Heath is warming up to preschool -- here he is knocking out some abstract portraiture.

He's growing into such a wonderful, big boy and it's a joy to see him learning so much, saying new words every day, and discovering the wide world around him and where he fits in it.  He enjoys pulling up our shirts and comparing our smooth tummies to his -- "You, me, same, same."  To Heath, the button represented something that made him different, something confusing and odd, and he's glad to be rid of it.  We're so proud of our little guy and full of faith that he will never be daunted by obstacles. 

Good job little eater, you did it!!! 

Back to School

Time has flown!  Here we are past the equinox and Fall is falling here in Seattle.  But today the weather is as perfect as it comes, so I'm typing on the porch among sunbeams and shade.

Since last we blogged so much has happened.  We had a super-fun visit from Grandma and Grandpa Montgomery.

   

Heath started preschool too -- what a big boy.  We go together twice a week for two hours.  He gets physical therapy and occupational therapy during classroom activities and is fascinated with all the new people and things to do.  The first day was overwhelming, but on the second day he seemed to be having a pretty good time.  We'll see if he continues to enjoy it... Drawing is sure fun!

Last week we took an old-fashioned road trip to Eugene, Oregon to visit my extended family.  We stayed with my 93-year old great aunt, Helen, who is a miracle and an inspiration!  

Aunt Helen put us up in her cozy house, cooked us pork chops, regaled us with stories, and hosted a passel of relatives who stopped in to meet Heath.  He enjoyed exploring her beautiful backyard, which is as neat as a pin and still full of pretty flowers.  It was so nice to connect with family and see the places where I spent so many happy summer vacations as a kid.

Last we blogged, I was looking forward to the removal of Heath's button.  Unfortunately, we still aren't there yet.  His pediatrician is just not sure his weight gain is sufficient, so she and Markus are going to speak this week.

As you can see, he is still not back up to his pre-wean weight, though he does continue to gain whenever he isn't ill.  We stopped giving him supplementary milk through the tube in late July, and right after that he got sick and we had a heat wave.  Ever since, he has been gaining between 1-2.5 oz. a week -- not bad!  At this rate he will find his ideal weight eventually.  His BMI is 14, which Markus says is OK.  He looks slim but healthy to us.

Since Heath was always tube fed at a caloric level determined by us, we are now in the process of discovering what his genetic body type really is.  My dad (whom Heath takes after) was quite skinny as a kid.  Aunt Helen told me that my grandma used to constantly try to fatten him up with half-and-half, to no avail! 

When he got married, my dad was 6'2" and 139 lbs!!   He has always been a relatively slim and healthy adult, and his brain development was apparently OK, since he ended up with a Ph.D. in mathematics!

At a time when 17% percent of children are obese, I'd rather that Heath start out on the thin side, but Dr. Heather wants to make sure we have all our bases covered before we take the more or less irrevocable step of removing the button, which I understand.  Ergo, the button remains, until she consults with Markus. 

Heath eats 1100-1200 calories daily (we recently did a micro-analysis of his calorie, fat, protein, and sugar consumption for the dietician) and gets supplementary vitamins, probiotics, and cod liver oil.  We offer him food every 3 hours or so, he is always excited about it and eats with gusto until he is full.  Sometimes a little, sometimes double the normal amount, just like any other kid.  I just can't imagine that there is a problem preventing him from eating more if his body needs it, but we'll run blood tests at his next appointment just to make sure his nutrition is on target.  I am feeling a bit beleagured by all this, as I watch him eating and enjoying new foods (crab cakes!  beef and sweet potato casserole!) and wolfing down his meals happily.  Sometimes I feel like my Grandma Alice must have, hoping her little string bean would fatten up and trying to sneak in a little more half-and-half...

Next week we are headed to Missoula to see some real estate and have meetings about the distillery we are starting up in spring.  We are looking forward to meeting Grandma and Grandpa Montgomery there and having some playtime on the shores of the Clark Fork River.  

Take care everyone!

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.

Summer Feasts

We've had an exciting week in Seattle -- Markus was back in town!  We all welcomed our favorite German feeding specialist and Heath was thrilled to reunite with his old friend.

This time, Markus was here to see Matthew, the little one I mentioned last week.   As we all hoped and prayed he would, Matthew became an eater!!   He started out feeling great, munching and playing with food happily during his first hungry days, but his journey from A to B wasn't a straight one.  Like Heath, he became glum and withdrawn on Days 4 and 5 of the intensive phase and began refusing almost everything as he lingered on the threshold of his big decision.  We visited for dinner on Day 5 and our hearts went out to Matthew, who alternated between watching us eat with a look of great skepticism, sitting with his eyes closed, and eating a micro-bite or two himself.   That night, Matthew received 200 mls of supplementary nutrition via tube and woke up perky and ready to face the situation anew.  On Day 6, he sat down at picnic and ate!!  His mom Judy shared this update yesterday....

"Matthew has been eating very well since Wednesday.  Right now he's interested in trying everything and his favorites are avocado, corn tings, veggie straws, cream cheese (he licks it off the cracker), apple, and milk.  Since Wednesday he has tried clams, pizza, chicken salad, slim jims, and oreo cookies.  Yes, it has truly been an amazing week.  I sometimes catch myself staring at him when he eats, in amazement that he's not gagging but loving the food!!  He actually loves his highchair now and wants to sit, sleep and eat in it all the time!"

 

"Emotionally, he is still trying to figure things out.  He woke up quite irritated the last few days, which Markus said is quite common because he's adjusting to his new oral eating self.  He has been more attached to me than usual and doesn't sleep well at night but I'm hoping that this will improve in time."

 

"Matthew was on 5 days of pretty much zero calories (except for some prune juice and water at night and naptime).  Monday was the most difficult day of all where he was very tired and refusing food almost all day.  We decided that Matthew needed a bit of nutrition overnight and after that, he started to turn the corner on Tuesday.  He's still getting some water and prune juice through his tube at night but last night I stopped giving him the extra nutrition and he woke up super hungry this morning."

"Last night I called my mother and we had a good cry over the phone because I can actually say that Matthew is an eater!"

 

We are so overjoyed for Matthew and his brave family!  Thankfully, he never reached 10% weight loss (Heath dropped 12%) and at the rate he is going, he stands to regain well.  Judy was a champion hostess, putting on play picnics every day for kids in the community who came to support Matthew or to see Markus.  Our online friend Sylvia, from Tube Fed Kids Deserve to Eat, brought her daughter Sarah all the way from Indiana to consult with Markus, and I hope to share what they learned in my next post!  Matthew and Sarah made a great eating team and their play sessions with food were not only therapeutic but hilarious.

Markus won't be returning to the U.S. for the next year and has a busy research schedule, but we are hoping that when he returns he will do some training in addition to more weaning!

Heath has been having a ball hosting his own little parties for his animal friends.   More tea, Mr. Owl?  You look a bit peaked.

Oh stop, Mr. Bear!  Your witty repartee is too much!

 

All this fun with imaginary cooking, stirring, serving, sipping and munching got me thinking.  There doesn't have to be food to be fun!  I've been chatting a bit with some of the moms over at Babycenter's online tube-feeding group where many of the babies and kids have tubes that are medically necessary, lifesavers in fact!  Some of the kids have metabolic issues that will prohibit or limit oral eating, and some aren't ready to eat because body and soul are recovering from big stuff.  Some swallows aren't strong enough to prevent aspiration.  All this made me reflect on our early days with a tube and how I was desperate to help Heath learn to eat.  Looking back, I wish I had relaxed.  He wasn't ready, and there wasn't a heck of a lot we could do about that!  What we could do was perhaps more important than I realized.   Our friend and OT Jeni taught us non-invasive ways to introduce fun, pleasure, and trust to Heath's mouth, which had recently experienced a lot of tough stuff in the hospital.

There he is grinning at two months as he enjoys having his cheeks brushed gently. 

And there he is getting one of his first tastes, a halved, frozen grape on his lips and tongue.  Whenever he signaled, "Enough, guys!" we stopped the game and went back to something more fun.

This was Heath's first "meal" -- tastes we were able to give him with a pacifier before his swallow was safe.  He didn't object and even smiled a bit!  I remember being so happy that day.  When he felt nauseous or had pain from reflux, these games weren't as enjoyable for him.

Jeni, and later Gay, taught us ways to build a relationship of trust and fun with Heath around his mouth and food that paid off as the months went by and he eventually started grabbing for french fries.  The rest is history!

From those kids for whom the tube is a positive, lifesaving choice (Heath was one of 'em), I've learned there can still be yuks around the dinner table, trust and togetherness, and maybe even a few things that are safe to taste and enjoy.  We are all on a different journey!

Speaking of journeys, Heath is learning to conduct trains like a pro!  Many thanks to the Johns family, who packed up their well-loved trains and tracks and sent them from Richmond, Virginia for Heath to enjoy.

Choo choo!!!!  Have a great weekend everyone!

Ready, Steady, Go

Heath is on his feet!  Over the past couple weeks, he has become a certified puller-upper and stander.  Here he is getting up to play make believe with Mr. Horse and Sheep.

Most of his make believe centers around animals who like to kiss, snuggle, fly through the air at high velocity, and of course, eat.  He makes little smacking noises as his barnyard friends munch on green toddler Legos.  Sometimes he even puts this fake "grass" up to his own mouth and pretends to eat it before politely offering more to Mr. Horse. 

The unfolding of Heath's abilities lately has been fascinating to watch.  Despite the fact that he never crawled and still bottom-scoots from place to place with effort, he has entered the stage of complete and total obsession with walking and upright locomotion.  His shoes are very much connected with this power in his mind, so much so that he can't go to sleep without them on.  After getting a sturdy pair of blue suede shoes from his buddy Zander, Heath realized that the stability and support they offered were helping him to stand and step more effectively.  He would weep giant teardrops if they were removed at bedtime, so we conceded to a nighttime footwear policy (and gritty sheets.... Eww!).  At night, his legs are moving all over the place.  Something in his brain has clicked and he feels he is ready to walk -- with our help -- everywhere he wants to go.  

The only problem is, he's not.  Or rather, certain lower backs are rebelling against spotting this little monkey as he walks up and down stairs, down the street, around restaurants, and into the kitchen for a snack.  His determined little legs are all over the place yet he is several months away at least from dialing in all the balance and coordination walking will demand.  Integrating different muscle sets is one of his challenges, but one that he is set to conquer at the rate he is going.  This gotta-walk obsession is typical for toddlers, who summon extraordinary powers to get up and running, so possibly his single-mindedness will result in leaps faster than we anticipate.  In the meantime, I envision a system of harnesses and pulleys running all over the house that would enable him to scuttle around at will as we stand, upright, cheering him on...

In the meantime, a Craigslist push-trike gives Heath a wonderful sense of freedom when we are out and about. 

 

He's also working on his penmanship.

Reading....

...and of course loving new and different foods, like Spinach Littles and Danish snitter pastry.  His weight gain was fantastic for over three weeks, then he got a cold and dropped half a pound, which he is now regaining.  Happily, he never stopped eating and drinking during his illness and we did not have to use the tube at all for supplementation!  Our pediatrician says we can remove the button from his tummy once his weight returns to its previous level and remains stable. 

Self-feeding is the next frontier! 

Heath has to work harder than other kids to feed himself efficiently, but to his credit he's determined to do it. A fair amount of food goes flying as he works to master this skill.  I feed him the first ten bites or so, then he grabs the spoon and focuses hard on scooping up food and getting everything aligned for a successful runway landing in his mouth.  When the spoon gets tiring, he plunges his hands into the bowl and tries to feed himself with his fingers.  At first, this chaos freaked me out but then I realized that learning about these crazy textures is an important part of the process.  Just as with feeding therapy, my anxiety wasn't going to help Heath relax and figure out the problem.  So we are striking a balance between ornamenting the dining room and its occupants with refried beans and maintaining sparkling cleanliness.

He's actually eating a strawberry in that picture, which takes a lot of skill! 

Maybe because Heath is telling us so clearly what he wants to learn next, I've been reflecting on the cues kids give us that they are ready to tackle a new milestone.  For tube-fed children, this can be challenging to interpret.

When Heath was on the tube, it was difficult to know whether he was ready to try eating or not.  For a long time, I falsely believed that kids who were gagging and vomiting were not ready to become eaters, because I read this in a protocol designed by a well-known feeding therapist.  I had also read that kids like Heath who had never eaten before had to be taught to use their mouth, lips, and tongue properly before they could eat, and I fretted.  How could he learn these skills when he didn't want us putting anything in his mouth?  In retrospect, I see that Heath was sending clear messages that he was ready to try food, with or without an oral-motor workout:  despite the fact that he wasn't hungry and vomited daily, he began to grab food on our plates, follow our every bite with his eyes, and go all googly in restaurants, where everyone in sight was chowing down.  Though he stopped short of tasting or swallowing much, these were signals that a part of him was psychologically and physically ready to join the feast (We knew his swallow was safe for nearly a year before he became an eater).  

All tube-fed children are unique, and some do have significant oral-motor or sensory challenges (e.g., supertasters), for which innovative therapeutic techniques exist.  In Heath's case, his mouth wasn't really the problem.  As I've written before, tube-induced nausea, lack of hunger, and oral trauma from lifesaving medical procedures were the issues that made him so averse to eating like other children.  Once those issues were addressed, his mouth jumped on board and his so-called sensory issues (i.e. trauma symptoms coupled with the novelty of eating) resolved.  Within weeks he was taking in multiple textures and consistencies:  thin and thick liquids, crumbled meat, thick breads, lumpy veggies, crunchy snacks, bananas, strawberries, cheese..... All without a single serious choking episode!  I'm so grateful his whole medical team supported giving him a chance, since we had no way of knowing for sure that he was ready to become an eater until he showed us.

Many of us in the Seattle feeding community are rooting for a little boy named Matthew this week, who is weaning here with Markus.  Matthew is a smaller kid, who had a feeding tube placed because of concerns about his growth.  Since getting the tube, he has struggled with persistent vomiting and intolerance of more than a couple ounces of food at at time.  Compared to most tube-fed children I have seen, he shows huge enthusiasm for food.  (I recall him struggling to open a bag of chips almost as big as he was last time he came to picnic!)  Though it is hard for us to see Matthew dropping weight and heading for the most challenging phase of the wean, we are all hoping to learn from him as he finds his way with food over the coming weeks.  Is he ready to eat on his own?  Only he can tell us. 

Wishing Matthew's family and everyone a happy weekend and lots of summertime fun!

Foodie Grrrrls!!

Wooooot!!!  Zoe and Caroline have joined the club.  I'm so excited to share great news of their heroic journeys from Tubeland to Foodland!

Zoe and Caroline are two Seattle sweeties whose moms, Shannin and Leslie respectively, became friends of ours through the tube feeding underground.  We've played, picnicked, kvetched and commiserated together, and they supported Heath during his transformation into an eater this spring.  Now we are overjoyed to see Zoe and Caroline leaving the tube behind!

Leslie and Shannin both spent lots of time conducting research, educating their medical specialists, and developing careful plans to wean their daughters from gastrostomy tubes that were no longer medically necessary.  Feeding therapy had not resulted in an eating breakthrough and it was clear the girls' history of overwhelming medical procedures had a lot to do with their aversion to eating, coupled with the fact that their bellies were full.  It was time to put power back in the girls' hands and find out whether hunger would awaken their natural instinct to eat.

Karen Quinn-Shea, a gifted occupational therapist at Seattle Children's Hospital who has helped over 40 children wean from tubes, suggested calorie reduction plans that would increase hunger but would not bring the girls all the way down to zero calories.  Hydration would be maintained throughout.  This type of wean is more often practiced in the US, whereas in Germany and Austria it is common to drop tube feeds and hydration entirely for a time.  The European method works more quickly (it was developed initally for use in clinics) and sends the body a profound and unambiguous signal, but the slow and steady method can work well for children whose instinct to eat is evident.   The girls started in early June and it took several weeks, but today both are full-on eaters and loving it!!

That little ray of sunshine is Zoe, 23 months old.  She has an advanced degree from the preschool of hard knocks, but it hasn't dimmed her exuberant spirit one iota.  She was born with a congenital diaphragmatic hernia (CHD) which required complex surgery to move some of her internal organs from her chest cavity back into her abdominal cavity.  A long stay in the NICU and lots of help from breathing machines meant that her early oral experiences were not all blissful.  She left the hospital on a feeding tube with no interest in eating. 

"Zoe was adamant about not wanting to touch food," said Shannin.  She refused emphatically whenever it was offered.  "She was so nauseous and had so many medical issues going on -- there were bigger battles to fight," said Shannin.  As Zoe's reflux calmed and her vomiting became less frequent,  she began to show curiosity during family mealtimes and would cautiously play with or suck a french fry, almost as if it was a toy. "We didn't want her to have bad associations with food so we never pressured her,"  said Shannin. 

At this point, Shannin and her husband Jason decided to try feeding therapy at Holly Ridge Center, which has a non-invasive approach to letting kids find their way around food.  During structured play picnics with six other children, Zoe became more comfortable seeing and smelling food in a safe, fun environment.  No one put a spoon in her mouth or forced her when she signaled, "No" or "I'm not ready."  Zoe began to enjoy food-based play sessions, but because she wasn't hungry, she usually stopped short of tasting.   "Therapy was really helpful in terms of sensory experience with food, but we could have continued it forever if we hadn't reduced her calories." 

Here is Zoe, skeptically-yet-intently checking out Heath at Baby Picnic at the beginning of her wean.  She was finally feeling hungry, and just four days away from her eating breakthrough...

The next day with her therapist, Zoe pretended to feed a doll snacks via mouth instead of via tummy, as she usually did.  On Day 12 of the wean she took a good hard look at some Cheerios and began to eat them, one by one.  Soon she was stuffing them in her mouth by the handful!   The dam had broken!!  What would she eat next?

Sunflower seed butter!!   Zoe gobbled this nutritious and calorie-rich food by the tablespoonful, demolishing three jars in two weeks and packing on nearly an ounce a day in weight.  Next she ate graham crackers, Nutella, pop tarts, goldfish crackers, fig newtons, and bananas.  She would taste nearly anything.  Tortillas with beans and guacamole.  Pho noodles and a bite of eggroll.  She was off and running and hasn't stopped since.

Zoe's weight dropped from a pre-wean weight of 25 pounds to 22 pounds 9 ounces about ten days into the wean.  Once she started eating, she gained impressively and was 23 pounds 13 ounces last time I checked.  Her tube feeds dropped 75% from their original level.  During the wean she got 250 mls. of blenderized food at night via tube, which has now dropped to 180 mls.,  and about 300 mls. of water throughout the day to keep her hydrated.  After Zoe's two-year weight check, Shannin hopes to stop the night feed altogether.  Zoe is drinking a few ounces a day now, which is wonderful progress!

Shannin wrote in her blog, "It is an amazing, crazy thing to have a child that eats!  Every day Jason and I are in awe watching her shovel food in and smile while she does it.  It is almost as if she doesn't remember not eating -- she loves it!!  To make things even better, Zoe no longer vomits at all!....It feels like freedom -- for both Zoe and us.  I can't even imagine how much better she feels.... Hopefully she never remembers any of this.... It feels like we have turned a huge corner in our lives and like a huge weight has been lifted.  Zoe couldn't be more amazing,  she continues to stun us every day with her strength and perseverance.  It has all happened so fast, I don't think it has quite sunk in yet.  We are one month away from Zoe turning 2 years old -- Unbelievable!  I remember when two days seemed like a huge deal.  Miracles happen -- Zoe's proof."

Zoe is really getting back to her old self -- weaning is psychologically stressful and can make kids needy and discombobulated.  She was "pretty much a train wreck there for awhile," says Shannin.  "She just wanted to read books for a good month or so.  She didn't play with toys.  She's been back to playing for two or three weeks now and has been really happy."  It didn't help that Zoe began cutting all her eye teeth and two molars at once after she began eating.  (This happened to Heath too -- the mouth says 'Hey, we need choppers, STAT!")  Zoe is back to babbling, playing, crawling and cruising in between eating turkey and cheese sandwiches, quesadillas from the drive-through, string cheese, pizza, scrambled eggs with heavy cream,  french toast, whole cupcakes, and whatever is on the kids' menu when the family goes out.  Which is easy to do, since Zoe doesn't vomit anymore.  Ever.    

Life is becoming so ordinary, Shannin is returning to her former passion for the first time since Zoe's birth: costume design!  A former professional costumer in L.A., Shannin will oufit an army of Von Trapps for the Sound of Music  on Bainbridge Island this winter!   "We are just being a normal family," she said, "which we've never been able to do.  It's very special to be at that point."  

Because she is still adding a range of healthy foods to her diet, Zoe continues to picnic with her friends at Holly Ridge, where she recently accomplished a first:  chewing and swallowing each of eight foods on her plate! 

Sweet Caroline too has become a triumphant eater!!!

A gentle soul with a precious, impish smile, Caroline was tube fed from eight weeks of age, when she contracted respiratory syncytial virus (RSV).  She was already struggling to eat due to a VSD, a hole the size of a quarter between the ventricles of her heart.  The added burden of a dangerous respiratory illness made her too weak to carry on eating.  An uncomfortable nasogastric feeding tube and other hospital traumas "put her over the edge" as Leslie says, and Caroline became 100% tube dependent. By the time she had recovered from surgery to repair her heart last summer (during which the hospital suffered a power outage! Thank goodness for backup generators....), all interest in food seemed to be gone. 

Perhaps because Caroline was nauseous and not hungry, she did not progress beyond food-refusal in feeding therapy, but in spring began to explore touching and tasting food "in secret" with her babysitter, Jillia, who employed a zero-pressure approach to playing with food.  Guided by Leslie, Jillia always asked Caroline's permission when offering food or engaging in games like face-painting with food.  If Caroline indicated, "No," then her wishes were respected.  Like Heath and his other tube-fed friends, Caroline was caught between two warring impulses -- self-protection and the urge to eat -- but with this gentle therapeutic approach she began to let down her guard and make progress in tasting.

When I met Leslie last fall, Caroline was vomiting up to 15 times daily, from reflux as well as tube-related discomfort.  Heath was vomiting up to 8 times a day.  Leslie and I were bleary-eyed, soldiering on in sweatpants and determined to find a way out of the tube-feeding trenches.  We soon learned how to add blenderized "real" food like vegetables and meat to the tube diet, which helped calm our kids' uncomfortable tummies.  Since then, we have laughed through the ups and downs and celebrated so many milestones.  During Heath's wean, Caroline's sweet, serene presence was a real gift at Baby Picnic.  She was already drinking tw0 or three ounces daily and tasting a variety of foods, so she was a fearless pioneer compared to the other kids! 

After watching Heath, Kai, and Rosie became eaters, Leslie knew she wanted to give Caroline a chance.  A speech-language pathologist herself, she did lots of research and thought hard about the best way for their family to approach a wean.  Caroline had endured so much, as had Leslie and her husband Mike.  If it was possible for Caroline to make her breakthrough without going to zero calories and dehydration, then they wanted to try that first.  Since Caroline was already an enthusiastic taster, a nudge might be all she needed.  Markus Wilken, the German psychologist who helped Heath, observed Caroline carefully at picnics and encouraged Leslie: "I think Caroline really wants to eat. She just needs to feel hungry."

With guidance and support from Karen Quinn-Shea, Leslie began gradually reducing Caroline's tube calories in early June.  As she wrote in her blog, "The first few days we skipped breakfast, the next few days we skipped breakfast and lunch. By day 7 and 8 Caroline was clearly hungry and the food that used to exit her mouth just as quickly as it went in, slowly started to linger in her mouth a little longer, and sure enough she eventually started swallowing! She ate yogurt, she ate waffles, and she ate cheese!  Now....two weeks later [June 22], she is slowly growing more confident in swallowing. She is drinking a lot of water, a little bit of milk, and eating a variety of foods, including cheese, tortillas, scrambled eggs, corn puffs, and macaroni and cheese." 

Caroline's therapy was to make eating as much fun as possible!  Leslie and Mike made up games to play in the highchair, kept the mood light, and taught her through smiles and laughter that eating is a hoot....not something scary.  They never pressured her to eat.  "Table manners and a balanced diet will come with time," wrote Leslie.

In mid-July, Caroline had a big setback.  She contracted an illness that brought three days of terrible vomitting and diarrhea and she stopped eating and drinking completely.  "I'm afraid to weigh her," wrote Leslie.  "Thank goodness we still had the G-tube."  Leslie gave Caroline Pedialyte via tube at night and over the next couple weeks she gradually regained lost weight and her previous enjoyment of food.

Now, Caroline is loving cheese quesadillas, pasta, mac 'n' cheese, waffles with peanut butter, bagels with cream cheese, bananas and lots of other goodies!!  I sometimes catch Leslie on her way home from the grocery store and get good ideas for things to try with Heath.  Caroline made the switch gradually over a few weeks while her tube feeds were decreased by 70%.  She continues to receive a few ounces of supplementation at night via tube, which will be reduced as she continues to gain weight.

How has becoming an eater changed things?  Over the past few months, I have seen Caroline blossom from a sweet yet self-protective girl into a more expansive version of herself -- happier, more humorous, expressive and playful!  Becoming an eater has really amplified these healthy changes.  From Leslie's point of view, "She is more confident, she finally has control over her body.  Her mood is better and I think that has to do with how she feels physically.  It's great to see her feeling good!"

Congratulations to Zoe and Caroline and their amazing familes.  It takes courage for anyone to leap into the unknown, much less a little one who has been through hell and high water and who does not have the capacity to tell us how she feels.  Watching a tube-dependent child with a profound medical history become an eater is a wondrous miracle  -- courage prevails, trauma resolves, and body and soul come into balance.  WAY TO GO, girls!!  You'll go far with that kind of spirit.

It's Been Great, But....

It was bound to happen.  Though they were so close at first, inseparable really, enough was enough.  Heath decided they needed some time apart.  In other words, the boy and his beloved Asian sesame cereal are no longer as close as they once were.  Sure, they get together at breakfast, but then they go their separate ways.  Heath is playing the field!  This kid eats fish, tacos, pork, sweet-and-sour chicken, super-burgers, berries and cherries, entire bananas, Swedish pancakes with lingonberries, and pretty much whatever wanders into his path.  Instead of a tentative bite or two, he dives for these foods and even asks for them by name.  "Ka-kuh!" he demands, when he spies a buttery Townhouse.  "A'nana!" he announces at snacktime.  And "Eer-yah!"  ("Cereal!") is still on the menu in the morning.   Though we were elated when he got hooked on this nutritious stuff, it is even more fantastic to see him transform into a fairly fearless eater.  I'm still getting used to leaving the house without food packed, knowing we can order from a kids' menu or forage in the wide world for something tasty.  Heath is a full-on member of the food chain and loving every minute of it.

We're starting to see the chub come back too.  I spied a bit of belly pooching out over his waistline yesterday, a wonderful sight.  He's drinking between 13 and 16 ounces of milk a day along with some water, and eating five times a day with gusto.  Being sick last month demolished his appetite for food and drink overnight and he dropped about a pound -- scary!  Thank goodness he still had the button so we we could give him supplementary hydration and food via tube.  After he gets through another illness without needing the button, we'll know we can safely remove it.  What a great day that will be!  I'm really curious to see whether having his button out makes it more fun for him to play on his tummy -- he has never been interested in belly crawling, and I don't think I would be either with a big chunk of plastic protruding from my abdomen. 

In other news, Heath is so happy with the bench his Aunt Sandy gave him!  He spends lots of time sitting at the desk Grandpa Ed built, reading about tractors and trucks.

 

We also paid our first visit to the shoe store, for a pair of sturdy Stride Rites.  These make it even easier for Heath to stand at the coffee table and do a little personal computing.

Summer weather has been great for boyish adventures.  Like meeting an African pygymy goat at the zoo....

And devouring an entire apple dumpling (aebleskiver) at the Nordic Heritage Festival!  WOW!

At seventeen months, Heath sure is thriving.  It makes me so happy every day.  Since he became an eater in May, such great leaps have occurred in his speech, mobility, and all-around joie de vivre, which was already pretty high.  Our whole family is happier, healthier, more relaxed, and totally grateful for all the ordinary things we have to enjoy.  

Hope everyone is having a great summer!   Next post:  Two more little girls in our community become eaters!!