Commencement

We have become accustom to the defining moments of our childhood being immortalized in baby books with pages pre-labeled for parents to keep a captain's log of life's firsts.  First words.....first smile.......a tiny envelope for the first lock of hair.....a page to record the first time your three year old daughter self feeds 150ml of repeated bites every fifteen seconds using the large therapy spoon.  Siiiigggghhhh....they grow up so fast.

We are on our last week here in the Omaha force-feed and yesterday was our last day in "clinic".  No more mind-numbing walks for tepid coffee in the hospital cafeteria.  No more naps on stiff mesh cots in the children's clinics.  No more dressing up as superheroes and fighting bad manners in the hallways filled with severe behavior management therapists.  No more researching my child from behind mirrored glass.  Cant say we're going to miss it.

Saying goodbye to "Pablo" the extremely

 loud

 children's guitar.

Cot nap with Nico.....

She did have an epic graduation though where the entire staff and other patients came out as she high-fived her way down the hallway in a graduation cap.  They presented her with a new bowl and spoon, a Frozen mirror, and a video of her progress....which we have watched as a family now about twenty seven times.
 Here is a link.  My favorite moment comes 40 seconds in where she clearly articulates what she thought about eating on the first day here. 
Click below for your enjoyment and for the clearest understanding of what went on here at feeding camp.
https://www.youtube.com/watch?v=-DTWY2Xh8e8


Today we started the outpatient phase of Mabel's treatment.  We are homebound for the next six days as the two primary therapists we have been working with come to our residence here in Omaha and work with us in a home setting.  Here we are in an environment with a real bed, a real kitchen...... and with a real brother who distracts her from her feeding sessions with epic Lego firefighting in the next room. 

We will be spending our last days here learning how to prepare foods for Mabel, freezing said foods, and feeding these foods to her in our home environment (and by home I mean our Omaha home....).  The recipe list is incredibly complex (1 can potatoes {yes...they come canned}, puree, 5oz Vanilla Pediasure formula; 3 frozen pre-made PB&J sandwiches, puree, 6oz Vanilla Pediasure).  We joke that graduates of this program will carry vanilla extract in a vial around their neck for the rest of their lives and add it to all foods to replicate the tastes of their youth. 

The outpatient therapy has potential to be pretty rough but we are hopeful and readying ourselves for an intense couple of years ahead.  We have been easing our way into it the past week by doing a drinking session each night here at home and Mabel has rocked them.  We were so confident that we decided to try to try seven drinking sessions this weekend.  We were six in when things when south.  Mabel stopped in the middle of the session and said "I'm not going to take my drink" and moved her head away.  Our protocol has us not reacting in any way and just continuously presenting the drink right in front of her face....and then trying to "deposit" the drink if she opens her mouth at all.  This led to thrashing, backhanding the cup, spitting milk all over me and herself and a full on puking episode.  A shower and a deep breath later and we were back at it.  Here's to hoping the freak outs and back steps are minimal.

 Oh...below are some pics of last weekend at the "cabin".  The woman who is letting us stay in her house has a family with a compound on their own private lake that they let us use all last weekend when our friends Sarah and Ray came down with their two boys.  Ridiculously awesome hookup.
 We spent our days lounging on the floating barge and our nights listening to thunderstorms roll in and rain hit the trees from our roll-aways on the screen porch.  It really felt like "food camp".  For realzzzzz........a fitting last hurrah before we head back to the West coast this coming weekend.

Awesome wrap around porch where we slept

Nude shuffle board

Flipping adorable

Cabin beach

View from the sitting area above the boat house

Proud graduate

An Unbearable Likeness to Eating

 

Hey friends who are still following this blog!

We're still here!  Woohoo!  Mabel and I have been chilling in Omaha the past few weeks.

At this point I feel like writing on this blog is simply a validation of my existence since my days have become akin to a record skipping on a groove here in Omaha.

Here's what's on the record:

Wake. 

Run with Mabel. 

Go to food camp.  

First session feeding bites to Mabel. "Take a bite.  Good job taking your bite.  Show me ‘Ahhhh’,  Good job swallowing your bite”.  Literally....I say this exact same thing over and over verbatim each session.

Playground slides. 

2^nd session. 

Walk to get coffee in the hospital cafeteria.  

3^rd session. 

Nap

4^th session. 

Playground swings. 

5^th session

….and repeat.

The good/great news is that the track we are on is working.  Our goal here was to reduce her belly tube feeds by 50% by the end of the summer, and we already reached that goal!  Yippee!  Seriously.... yippee!  All was not for naught.   She is no longer having to have a tube feed during nap and she is getting a lot less at night.  Yay!

We are currently having 3 sessions where she is eating pureed food herself every 30 seconds and the drinking sessions have been upped so she takes a drink every 15 seconds (sniff, sniff…..she’s turning into her parents at Ninkasi….OK…mostly me)  I am in with her now for every session so my small dreams of learning more Spanish or maybe reading more books while she worked with therapists are now squished.  

But she's eating....so yay!

Our only nemesis right now... Squash.  Fuck squash.  Seriously.  Every time it comes up on the menu Mabel goes bananas (or goes squash....wait...goes off her gourd....hahahahahaha...oh squash jokes) and spits it out, smears it all over her tray, hair and me.  She then proceeds to try to break the straps of her high chair like a 3 year old with roid rage.  I then scoop up what she spit out and try to re-feed it to her as she is bellowing her hatred of this food.   They won’t take any of the 16 foods off the menu because they say if a kid learns they can get out of eating something by losing their shit, puking, etc they might try it with other foods.  So everyday the squash comes.  And everyday Mabel lets that butternut feel her wrath.   

But it’s only one session each day so I just bring a change of shirt and wait out the storm. 

Mabel and I have been breaking the monotony here in Omaha by sneaking in to Omaha’s oldest country club on pretty much a daily basis and hitting up the Children’s museum on “late night” Thursdays.  The pool at the country club is old, cracked, and a little bit dirty; but people will approach my chair every 20 minutes and ask if I want anything which is always met with a request for beer and fries.  More pools should be like this, peeling paint and all.  I have been eating a lot of fries.  My own version of food camp.  I am successfully taking all of my bites and drinks.

 

 Strangely enough, Mabel's favorite hangouts at the Children's Museum all involve food and cooking.  Maybe because eating has just been a game for her up to this point?  Dunno.  But she is way into making me take bites of pizza, cake and Omaha steaks.

 

I also got to raid all my old toys when I visited my parents.  The ViewMaster is the "it" toy right now in addition to my Gremlin record books.

We also had a great weekend where the kids met up in Lake Okoboji, Iowa.  I think it is the only lake in the entire state of Iowa.  No offense to anyone from Iowa or currently residing but....shit.....wow.....corn.  Zzzzzzzzzz.

The reunion was adorable and both kids spent 24 hours hugging….most of the time.  We miss being a family.  There is also an amusement park there where the scariest rides are just frightening because they are old and give every indication that they are going to collapse on small children.    Which is scary....for real.  Well done amusement park.  Well done.

 

Midwestern cooking update!  Spaghetti salad.  What’s Spaghetti salad?  Well…boil a pound of spaghetti, cut up one tomato, one green pepper, a can of black olives and add the secret ingredient:  ½ a jumbo bottle of Italian salad dressing and  ½ a jumbo bottle of Catalina.  It’s like spaghetti without that disgusting healthy sauce.  You are welcome, foodies!

 In addition, here is some other Wisconsin awesomeness?  Nothing says "fun" when you're playing Spoons with your cousins like playing with a deck of Wisconsin "Cold Cases"!  Each card features an unsolved murder or abduction.  Huh......

Oh.....we also got to visit my brother in Wisconsin.  He let Nico slide down the fire pole (but not me...I don't know if injuries like that ever really heal.....sniff, sniff.....someday....someday)

 Anywho....We are missing Eugene even more now but can see the end of the month at least from the page on our calendar.  Hope everyone is having a summer swan song coming up before the year begins anew.  Bye for now.

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!