A Day in the Life of "Food Camp"

Hi. This is Codie. I've been hanging out with Mabel 24/7 for nine days now (we're totally over each other) and I thought I'd give you all an update on "Food Camp" and how Mabel is progressing.

Feeding Campers hanging out in Mabel's dorm room.

Mabel has five "meals" a day. Some meals are 45 minutes long and some are 30. Three meals involve eating solids (but her solids are pureed) and two involve drinking yummy vanilla PediaSure. Yes, her vomit (and as a result our house) will continue to smell like gas station cappuccino (but she actually doesn't vomit that much anymore... more on that later). Her solids sessions involve 16 different foods--all ground up and mushy--fish sticks, chicken, baked beans, white rice, potato, yams, peach and on and on. It's pretty cool because Mabel is eating all 16 foods whether she likes it or not. These people don't mess around.

Because Mabel started doing super well with the feeding therapists back in week one, they actually have had to put Caleb and myself into the feeding ring for 3 of the 5 sessions every day (as opposed to watching her from behind a two-way mirror in the observation room). Mabel was acting too "good"; she would eat her food and drink her drinks and not turn into that girl from Poltergeist with her head spinning around and screaming like she does for us when we try to feed her. They needed to see her "naughty" behaviors so Caleb and I had to stop surfing Facebook (oh yeah... Caleb's not on Facebook...right...then why is he on my account 24/7? Oooooh! I'm in trouble now...) and reading our pleasure summer reading material and be tortured by our daughter. Yuck.

Just three girls with feeding tubes going for a walk in between session to the hospital's Starbucks.

Each meal has a serious of sessions where she has the opportunity to eat or drink 5 bites/drinks. Behavior therapists and technicians record insanely detailed data during each session. Did she take her drink within 5 seconds?  Did she engage in inappropriate behaviors? Did she bitchslap her mom's face (yes, she did that on Tuesday)? Did she cough? Did she puke? Did she ignore the food and instead tell a story about when her cousin, Harper, stepped on her foot in DisneyWorld? Each session has a different condition set up to observe how Mabel will react. "Escape" condition is where we tell her that if she turns her head, touches the spoon, or touches the feeder's hand, they will put the spoon back. The feeder will not talk or play with her for 30 seconds until the next bite is presented. In an "attention" condition, the feeder will give all the reasons why Mabel shouldn't be naughty (after she does something naughty), for 30 seconds, while hovering the spoon or drink near her mouth. This ENRAGES Mabel. I have had to do this condition so many times because she started reacting to it so much. As soon as I let her know the rules of the attention condition she turns into an evil monster and starts hitting my hand, pushing me away, kicking me, screaming at me, crying--it's nuts. I'm learning that Mabel loves flipping out and I'm assuming part of her future treatment plan will be giving her absolutely no attention for inappropriate behaviors. It's amazing how this realization makes so much sense as I reflect on so many meals trying to get her to eat.

Since the beginning and continuing to this day, these eating times are designed to figure her out--what motivates her "inappropriate mealtime behaviors" and her refusal to eat, as well as what motivates her and leads to more successful eating? After the therapists and psychologists observe a clear pattern of behavior, Mabel will receive her treatment plans for solids and liquids and then we will start implementing them. This happens between weeks 3-6 and we are currently in week 4 and they are still trying to figure her out.

After they get a treatment plan, we can start working more on getting food in quicker and in larger amounts. A huge highlight of my week occurred this Tuesday when she moved up from a small feeding spoon to a larger size. Boom! More food in every bite. She's handled in like a champ--only puking once (in fact she has only thrown up her bites twice this entire time). Rumor has it that tomorrow, she is going to move up from drinking 2mL drinks to a larger amount. The excitement!

Look at the spoon on the left! That's the big spoon!

There's so much more to say but I'm tired. A few more tidbits:

I play with a broken Princess cash register for hours each day w/ Mabel in her feeding sessions.

I get overly competitive with myself when feeding her because I am so bored. I got 10 drinking session in a 45 minute meal by streamlining my every movement. That was a great accomplishment. Oh yeah, and Mabel did well, too.

They are predicting that Mabel is going to get out of the program with a 50% tube reduction which is pretty good for a kid with a history of vomiting.

They are predicting that Mabel will be in two years of out-patient therapy, following a strict eating protocol, before she becomes an "age-appropriate eater". This is not going to be easy; we have a long road ahead.

Man, I could write ten more pages about this but this is probably enough. I miss you guys. Call. I've got a lot of time to chat on the phone. Thanks for reading. Codie

Vacation from the vacation.......

Hi super summer friends.  We have begun our official month of separate lives and separate children.  Codie has been sticking with Mabel feeding her heaping spoonfuls of pureed chicken and broccoli in Omaha while I have been gallivanting around Wisco.  We're switching in about a week.   So I'll let Codie update on Mabel's progress and I will jabber about how amazing Wisconsin is.....because I know you are all dying to know what you are missing......:)

Nico and I have been spending most of our Midwest time in Delavan where I grew up.  Update!  They have 20 new historical murals painted by a group called the Walldogs that travel around the nation and choose towns to paint murals in based one how rad they are......Delavan is pretty rad.  There are murals showcasing the Wisconsin School for the Deaf's football team in the 1940s and the Circus headquarters but also others that have highlighted the mafia influence on the resorts in town, Latino potato farmer collectives, Harry Houdini, Frank Lloyd Wright's architecture on the lake and the artists communes existed here in the 1870s.  Yep....my hometown is pretty great.

We have been doing a lot of fishing around Delavan.  In Wisconsin, fishing does not mean wading down a stream casting every three minutes and becoming one with the current.  It means throwing your line in with a bobber and staying sober enough to see if it drops below the water.  Nico has mastered the fine art of feeding worms to small sunfish on the side of the pier.  I have also been drinking a lot of Spotted Cow with my Dad.

This is where I run in the morning.  Former cross country route.....

Downtown Delavan

Nico was NOT into standing by this creepy clown statue and the statue of "Romeo" the elephant.

Nico caught about 37 fish this size.

Lots of swimming in aforementioned fishing lakes.

 

 

We also spent a weekend in Madison remembering why my cheese clogged heart goes pitter-patter when I think of it.  Madison is so cool.  I miss it.   The zoo is free.  My sister is there and was an amazing aunt.  While I was there both the New Pornographers and Shamir played free outdoor concerts.  Cool friends live there.   People hang out and drink beer and eat food that is bad for you.   Gush gush gush......

I

The Bloody Marys all have amazing garnishes and all are served with beer.  (Ex #1= a giant piece of local beef jerky (as long as the glass!), a pickled egg, cheese curds and a house cured pickle.  Example #2 included pickled everything in the world, summer sausage, 4 types of cheese.)

I was a part of eating 5 separate orders of deep fried cheese curds.  One basket at the Union Terrace.  Nico approves.

The finale of Madison awesomeness was maybe one of the best 24 hours of my life.  I drank beer at the Union with old friends, Old Fashions at the Plaza, ended up playing Smashing Pumpkin covers on borrowed instruments at Smart studios (of Nirvana, Smahsing Pumpkins, Death Cab, L7, etc fame......)with my former roommates before the English Beat's drummer and singer showed up and we played Steve Miller covers until 3am (they are from England and asked what famous musicians came from Madison).  I realized I can play a surprising number of Steve Miller songs on guitar.  Then I got a ride in a Porshe to State Street to eat breakfast burritos at a randomly weird restaurant.   6 hours later I was watching Favre pass to Chmura with my Dad and sister.  Pretty great 24 hours.  Madison made a hard sell for moving back......sigh.......love.
Mabel update soon!

Hidden Omaha......revealed!

So....I know you are all on pins and needles regarding what there is to do in Omaha when you are not pumping pureed fishsticks down your daughter's gullet (that is actually one of the sixteen foods she is being taught to eat..and no, they do not puree tarter sauce with them....no wonder she's not loving it).  Here's the skinny on Omaha fun......sorry....bad choice of words given our situation.... :(

 During breaks at food camp there are two playgrounds.  We share these areas with a camp for children with special needs and the other half of the program at our clinic.....children with severe behavior disorders.  I haven't been able to photograph the clinicians who work with the kids with behavioral disorders but they wear padded suits straight out of American Gladiator (I'll post one if I get it).  Just about every five minutes on the playground someone loses their shit, starts screaming and punching things and has to be carried out in an arm lockdown position by two bulky bodyguard-ish therapists.  It adds to our time on the slides.  There are also mandatory times when we can't be in the hallways as dangerous children are transferring from therapy sessions.  I am making a shiv out of Mabel's Frozen magnets just in case we need it in the halls.

 

We went to a pizza place behind the hospital that has been on Jeopardy. 
The Question: "Our head Writer says the best pizza at LaCasa Pizzaria on Leavenworth St. in this largest Nebraska city?"

Answer: Omaha

The place is called "La Casa"  It’s pretty yummy....thin crust...family owned..... and has this guy on the sign.  I ate half a pizza by myself.  I don't think I am proud of that......

 I have also eaten a disgusting amount of cheese curds in the past week.  So has Nico.  What can I say...they're squeaky.  Neither of us plan on shitting for the next month.  Thank you Midwest.

 The Omaha art museum is free this summer. It was pretty great to give Nico his first George Seurat/Ferris Bueller experience with impressionist paintings.  He ended up explaining how to view an Impressionist painting to all the patrons that entered the gallery to show them, too, the magic of getting close and seeing a mess and then backing up and seeing an idyllic water garden.  Super cute.
 
  It was not as fun to have to explain Jesus shooting blood in cup and breast with skull.....OK...it was fun making up reasons for both paintings.  Kind of like art Madlibs.....

We also got to draw on each other's faces with marker through a window and make a stop motion animation movie where two dinosaurs ate just about everything in the vicinity.  The fun never stops!

Pre-getting yelled at for playing in the fountain outside the art museum

Post getting yelled at for playing in the fountain.  I blame me and my bad parenting.

 OK...this was weird.  In the "Mall that time forgot" (No joke...this mall had no stores and the food court was boarded up.  There was a man doing a radio show from a former Payless shoe store,  a Radioshack that was now home to a Thai eyebrow threading operation (but was still called "Radioshack", and a kiosk that was manned by absolutely no one selling $7 sunglasses and sadness.)  But one of the stores is now a Czech and Slovak museum.....they had a sign saying they were only open form 12-5 on Saturdays and Sundays due to lack of volunteers!  Seriously considering donating my time and Czech-i-ness to making this summer a little something special for the Czech community here in Omaha.

 Also, if you cross the river in Omaha, you end up in Iowa....which is kind of like a great big Omaha.....and what do they have to offer in the great town of Council Bluff, Iowa?  Well funny you should ask.  You could go to the "Squirrel Cage Museum" and have this guy tell you about the infamous squirrel cage prison that was the world's only rotating prison until the 60s.  It was supposed to be more secure because you only had to access to one inmate at a time because it was revolving constantly around the outlet.  It made a lap every ten minutes.  Yep, we learned about it today.  Wow Council Bluffs!  That's crazy!  But what else?  Oh, you are home to Black Squirrels and have a law against tampering with them.  I love this place!

 I know you are all now turning green looking down at your i-phones on the beach reading this....or from your sat-phones on your camping chairs sitting next to mountain lakes after rafting all day and fuming with jealousy.  You should be.  Oh yes....you should be. 

Little boxes, little boxes......

This past weekend Omaha exploded.  No seriously.  Fireworks are legal here.  All kinds.  Huge kinds.  We lit one called ‘The Widowmaker” at a lake this past weekend that cut open the chin of the boy who set it off.  And on our drive back to town the skyline was not simply dotted at a point by the city fireworks show….it was lit up by every neighborhood’s firework show.  Correction, every backyard’s firework show.  You could turn 360 at any time between 9:30 and midnight and see streaks of red, white and blue in the skyline-- sizzling, whistling and crackling.  When we went to sleep on Friday it sounded like D-day in our neighbor's yard and there was no sign of a stalemate by Sunday night……shit is intense.

But as of right now.......I’m sitting with my feet in a manicured lawn in a suburb of Omaha, Nebraska.  I am afraid to appear that I am too relaxed or content with the sun on my face for fear that it will illuminate that we are not destitute and therefore not in need of our gracious benefactor.  So I will sit here in the sun and secretly curl my toes around the blades of grass and smile on the inside at our good fortune. 

This is a good time to express how incredibly lucky we have been in Omaha so far.  A week before we came out here we found out that the Ronald McDonald house was full and we were 6^th on the waiting list.  We were envisioning spending our savings on hotels next to the hospital for the foreseeable future and refilling our cooler with frozen chips from the ice machine when Codie’s mom, Deb, rushed in to the rescue.  Her oldest friend from- Armstrong, Iowa- lives in Omaha and offered up her house for the summer while she moved in with her mother three doors down.  We scored.  And her lawn is manicured.  My toes are enmeshed with it.

Which does not say it does not come without it’s strangeness.

Omaha is America’s “test city”.  A test city since it is supposed to model the same demographics of the U.S. proportionately.  For being America’s test city it also seems to emulate our race relations across the nation as there seems to be a clear divide between cultures and privilege depending on where you live in town and the color of your skin.  Our neighborhood is white, white and more white with a heaping spoonful of WASP.  There was a 4^th of July parade that looked like it fell out of Martha Stewart Living and landed on a Hollister store.  The women all wore red white and blue scarves with their capris and the men wore peach shorts with plaid shirts.  And, sure, we are white too.  But this is white upperclass culture squared with luncheons at the clubhouse.   Warren Buffet lives close to the neighborhood (which, by the way, is our new drinking game.  Everyone in Omaha will mention how amazing the zoo is or that Warren Buffet lives here within five minutes of meeting them if they hear you are visiting).

And this is how my feet ended up on this incredible lawn…..there are no gardens in this neighborhood.  Only lawns.  Miles and miles of lawns.  All the same height.  All vibrantly green.

            This is not to say that our hosts are snooty or stuck up.  Nancy, the woman whose house we are staying at, is a saint.  She gives and gives and gives…not just to us but to people biking through town who raise money for cancer (she offered up her mom’s basement to them) and to our family by inviting us to go out to their lake house and with offers to give us tours of Omaha. 

And not to say we are not incredibly thankful.  Although I did plan on writing the great American novel about the Ronald McDonlad house I will be content to hear stories from some other families in our program (plus the Ronald McDonald house allows no food or alcohol in your rooms…they do room checks!). We are truly fortunate.

            In the same breath…..I miss Eugene and have a new appreciation of Deb’s situation when she moved to be with us two years ago.  She said she felt uprooted and disconnected.  She felt like people were plenty nice and asked her questions but she constantly felt like an interloper.  This is our existence so far.  Our hosts have been astoundingly kind and engage me in conversations about Mabel and the weather in Oregon.  But I find myself sensing their obligation and slinking back into the lawns to play with Mabel and Nico to spare everyone the need to spread their arms further. 

“Sit. Feast on your life”  wrote Nobel-winning poet Derek Walcott when he wrote beautifully about being at home in ourselves.  But is that enough?   Where do we find that place to make a home in ourselves.

I’m reading a book by David Whyte and he writes:

“To feel as if you belong is one of the great triumphs of human existence — and especially to sustain a life of belonging and to invite others into that… But it’s interesting to think that … our sense of slight woundedness around not belonging is actually one of our core competencies; that though the crow is just itself and the stone is just itself and the mountain is just itself, and the cloud, and the sky is just itself — we are the one part of creation that knows what it’s like to live in exile, and that the ability to turn your face towards home is one of the great human endeavors and the great human stories.

It’s interesting to think that no matter how far you are from yourself, no matter how exiled you feel from your contribution to the rest of the world or to society — that, as a human being, all you have to do is enumerate exactly the way you don’t feel at home in the world — to say exactly how you don’t belong — and the moment you’ve uttered the exact dimensionality of your exile, you’re already taking the path back to the way, back to the place you should be.
You’re already on your way home.”

So I’ll take that….and start my journey back home now.

Miss you all if you’re reading this (and not at all if you’re not!  Bam!  Ha!)

Happy/ Sad Birthday

 Greetings from enchanting Omaha feed camp!

I know most of you are wondering, “what does feeding camp look like...and…..can I go?”  In my visions it always looked like a Sleepaway camp with food related activities and doctors that handed out merit badges.  A paddleboat float on the rootbeer river, archery where you shot baked apples and counselors who actively helped you hide Snickers bars from the canteen under your pillow.   At night we would make high calorie Smore’s and I would gain ten pounds on the pancake-eat-off alone.  I even expected an organized food raid one night where we would wake up by flashlight and plunder the cook’s storeroom waking the next day with bellies full of butter.  There was also ball pit like the ones at Chuck E Cheese’s filled with gravy and assorted donuts.

It is sort of like that only not at all.   

OK…there are doctors here.  Our days start at 9am for the first of five feedings.  They take place in a white room with a mirrored monitoring room attached (that’s where we hang out).  I think of all the psychology studies I have shown in classes and I can’t help but feel like at any moment they will check to see if she will pass the marshmallow test (which, by the way, Mabel would ace right now given that she doesn’t eat anything...she has amaaazing self control) or that they will ask her to turn up the voltage on a knob to discover the roots of evil in humans.  It’s super surreal watching your daughter from the eyes of a behaviorist and then look at the data and graphs after each session.  It’s both weirdly fascinating and alienating at the same time.

Right now we are getting a bunch of baselines to set some goals.  No joke….yesterday, we spent the ENTIRE DAY trying to find her toy preferences so we could optimize rewards for eating (and there were a lot of toy options).  It consisted of the therapist team presenting her with choices of toys (the Barbie dream cash register….or the Elmo head crunch toy).  She would reach for one and they would repeat the process with another toy.  It was like some never ending eye exam:  "This one or this one"..."OK...this one or this one".

They finally narrowed her favorite rewards down to….wait for it….a Backyardigans guitar that plays the exact same song over and over and over, a gender-boxing Barbie cash register that electronically asks “what would you like to buy today, princess” and the researchers singing her songs (which is actually pretty funny to watch from behind the mirror…..the lead researcher is actually a legit beatboxer and did a happy birthday remix for her today).  But that is what feeding camp looks like.  No regatta or relay races.  But there are timed toy preference choices, timed bite opportunities, and timed drinking opportunities. At least she gets to compete at something.

On the plus side, we have scientifically narrowed down the perfect birthday present for Mabel.  A cashtar…guitar/ cash register combo.   I will be drawing up the plans and making a prototype beginning today.  When I mentioned that to the therapist he frowned…..not a good idea to introduce a new highly preferred toy when they were working on her eating for rewards.

Sad birthday…. :(

Don't worry.  We supplemented last night by blowing out candles, watching birthday greetings over and over and over on facebook (thanks everyone who did that!  She looooooved it!) and having an epic session with her Madeline books.

Happy birthday! : )