Tuesday, August 13, 2013

The Trouble with Food

(New here?  I suggest you read the first post on the Children’s Hospital Day Feeding and Swallowing intensive program, HERE).

It was going so well!  Week 1 of intensive feeding school got us to the point of where Sophie happily ate hotdogs and macaroni and cheese in addition to her few preferred foods.

Over the weekend when she does not have the program, I was thrilled to successfully get her to eat 2 hot dogs and strawberry applesauce.  Yesterday in therapy she even ate pancakes and pureed broccoli!  I made a modification to her umbrella stroller with PVC pipes and duct tape (costing only $3.46) to extend the handles and it worked like a charm.  Those original handles are just too short!  The compact stroller is good for taking on the train and keeps her from getting too tired from walking.umbrella stroller modification-001Today was my day with her and the stuff hit the fan.  I got into trouble for feeding her in the same manner that she is fed during therapy as I could screw it up.  At her first of 3 meals she was introduced to eggs with a little cheese.  She spit it out every time and started chucking her toys across the room, yet it wasn’t that bad.

Prior to 2nd meal Mr. P. asked if they could use her iPad as incentive and I agreed.  Big mistake.  I was gone for maybe 5 minutes to heat up my lunch.  We are not allowed to eat in front of her as it is cruel, so that means when she eats we eat behind the two way mirror as we observe the session.  When I entered the observation room, this was happening.

What the what?!  She is not supposed to know that we watch her sessions so I couldn’t rush in and comfort her or pick her up and run away.  So I watched her as my own lunch got cold and she melted the.heck.down.

I am a parent.  I am not a feeding therapist so this is my layman’s understanding of the protocol.  I understand why they do what they do, but it does not make it any easier to watch.  The rules, which are stated at the start of every session are simple and clear.  Eat and you get to play.  Don’t eat and I will need to help you.  Still don’t eat and you won’t get to play.

When sessions go badly, as they did for the duration of this meal and the last meal, they will not alter protocol.  She could be having a bad day or not feeling well, so they want to give her the benefit of the doubt.  They also want to show her consistency.  However, the psychologist sat with me for 3rd meal and we had the talk.  She gets one more meal with this protocol.  If she continues to refuse food, in order to continue the program we will need to give permission to add a helper to block (hands, turning away) so that the feeding therapist can get the food to her mouth.


It wasn’t even the food that set her off in meal #2.  It was using her iPad as incentive.  She melted down when she had to take a break from it for the first bite and could not pull herself out of it.  After meal #2 we checked into one of the hospital resource center’s sleeping rooms for a nap.  (Now I can say I stayed in a room you order by the hour. ha!)  The volunteers gave her a choice of a stuffed animal to keep and she selected a pig with wings.

pigs fly-001 (waiting for the train)  “So you want me to eat eggs?  When pigs fly!!!”

When it was time to get up she was grumpy and was in meltdown before we even started the last session.  It wasn’t about the food, but she refused every bite.  Remember, the video above is less than 2 minutes and each feeding session is about 30 minutes.  It feels much longer. 

So, looking for silver linings…

1. We are blessed to live here and have access (fully paid by insurance) to this program which is run by experts who know what they are doing.  We have to remember that and trust them when sessions get hard. 

2. We are blessed that Sophie’s siblings are having such fun in Iowa and are getting to know their cousins well.  Their grandparents are spoiling them and we know they are in capable and loving hands.  Sophie talks about them and asks us to take her to Baba’s house (Grandma Paula) every day.

3. On my morning off yesterday I got a mani/pedi and dropped off a load of stuff to the thrift store.  Mark and I are de-stuffing our Oreo (ala Amy Armstrong), and decluttering our home feels great. 

4. Many friends have been signing up to feed us!  We haven’t cooked in a days (which is a huge blessing).  Thank you to my boss/mentor/friend Diane for coordinating this and to all you lovely friends who have signed up (Mara, Sue, Mariah, Nancy).  Sophie’s program makes for long and exhausting days so we REALLY appreciate it y’all!

5. On Friday we have our fabulous sitter because we have tickets for the Cherry Poppin’ Daddies (one of our favorite bands from way back) at the Sellersville Theater.

6.  Mark is on sabbatical until January which allows him to focus on Sophie and finish going through his latest book’s copy edits and indexing.

7.  My job is part-time and my boss is amazing.  I’m setting my own schedule which changes from day to day. 

8.  Lastly, we share the cutest pair of feral bunnies with our neighbors.  They’ve been hanging around our back yards since Spring.  Mark calls them Lounge bunnies.  It’s not possible to be upset when we come home to see our friends.

lounge bunnies-001We have 2.5 weeks left of the feeding program and we will take it day by day.  We are grateful and are moving forward.

Friday, August 9, 2013

Feeding School

Sometimes kids don’t eat.  I’m not referring to picky eaters who hate lima beans. (Doesn’t everyone?)  I’m talking about kids that for one reason or another have serious eating problems not caused by lax parenting or strong wills.  Some kids require being fed through a g-tube.  Others like Sophie and Alexander start out eating a wider variety of foods only to narrow their preferences down and then subsist on these same few foods every.single.day.

Sophie and Alexander both eat a small variety of crackers and chips.  Sophie’s favorite is baby goldfish crackers from Pepperidge Farm, (must be baby goldfish as she gags on the regular size), but no broken crackers.  Alexander prefers BBQ Pringles.  They both love popcorn and chocolate milk, though Alexander must have his slightly warmed up.  Cold drinks bother him.  They also both refuse nearly all fruits, vegetables, and meats.  The only exceptions I can think of are the smooth fruit medleys that come in squeezable pouches that Sophie occasionally eats.  We call them squeezies.  Alexander will eat hotdogs or chicken McNuggets (must be McNuggets) from time to time, but mostly he eats peanut butter sandwiches (no jelly) on wheat with the crusts cut off.  He doesn’t like meat now that he knows it comes from animals and complains that it makes his tongue feel funny.

Sophie had her first appointment with the children’s hospital Feeding and Swallowing specialists in September of 2012.  Yada yada yada, it’s now August 2013.  Alexander and Helena are enjoying an extended visit with the family in Iowa so that Mark and I can focus on Sophie.  She began an intensive outpatient program at the children’s hospital on Tuesday, 8/6.  For the month, Monday through Friday from 9am-5pm we will be at the Day hospital participating in the feeding program.  We hope that Sophie can learn to eat and that we can learn how to help Alexander as well. 

Sophie is allowed only 4 ounces of chocolate milk in the morning at home.  Then at 10am, 1pm, and 4pm she is with a feeding therapist while we watch behind a two way mirror.  During week 4 Mark and I will begin training to feed her ourselves.  In the evenings at home she can eat anything as long as we log it and she must drink a specific amount of liquids.  The plan is extremely regimented, time consuming, and exhausting.  It is also extremely successful.

1 watermarked Tuesday was Day 1.  The lead feeding therapist (we’ll call him P.)  and I observed as Mark attempted to feed Sophie.  This gave P. an insight into her food avoidance behaviors.  The rest of the day was mostly meet and greet with tours, a session (for us as parents) with the psychologist, a vitals check and physical exam.  Soph will be weighed weekly and her calorie requirements while at home adjusted based on her consumption at the hospital.  Her team consists of a lead feeding therapist, a team of feeding therapists, a social worker, psychologist, nutritionist, physician, an occupational therapist, and medical and psychology students.

2 watermarked

On Day 2 P.  introduced the rules to Sophie, which are pretty simple.  Eat your bite = get to play with your preferred toys and receive praise.  Don’t eat = you will be helped to eat.  Keep rejecting food = no play.  There’s more to it of course, but it focuses on lots of praise for compliance while ignoring noncompliance at first.  If noncompliance continues, then they might use hand over hand to get the food in.  If that doesn’t work, then blocking her hands or even techniques to open her mouth may be used.  All of these techniques are discussed with us before they are implemented.  It is hard work for our little girl.

3 watermarkedHer meals consist of a few different foods that are in Styrofoam cups off to the side of the therapist.  She is presented only one bite at a time so that she is not overwhelmed by the sight of the entire meal.  Sometimes the spoon or fork will have food on it and presented on a plate.  This minimizes the work she has to do so she can focus on eating.  Other times she must get the bite from the plate to the utensil herself.  A lot goes into good wrist movement, hand control, and coordination.  Sophie still struggles with this. 

4 watermarked

For the first few days Sophie was presented her preferred foods.  She was given her favorite toys and bubbles when she complied.  This allowed the therapists to earn her trust.  Then, slowly, food she used to eat but has lately refused (such as macaroni and cheese & hotdogs) were added.  To our shock and great happiness, she complied easily.  5 watermarkedToday is the last day of week 1 and my first day alone with her without Mark.  He prefers to drive into the city despite the heavy traffic.  I prefer the trains, so off we went!  I appreciated so much the kindness of strangers who held doors, carried our bags, and engaged her in conversations. 

At her first feeding P. introduced bananas, which is something she has NEVER eaten.  She ate the first bite and I fell off my chair.  Then it got real.

These are only a few of Soph’s avoidance techniques.

She successfully avoided or spit out pieces of banana many times during meals 1-2.  The bites got smaller and smaller and P. mushed them up to the consistency of pudding to make it as easy to eat as possible.  The first time he took her toys away she did not cry, but she was shocked.  She didn’t say a word but she looked at him as if to say, “What the heck is going on here?”  At this point, if a bite got in regardless if she spit it out, she was praised and the spitting was ignored.

6 watermarked

Using her IEP as a guide, Sophie will have two hours of OT/week.  I watched this morning as the OT sprayed shaving cream over a foam alphabet.  As I could have predicted, when presented with it, Soph flipped it over.  She does NOT like getting her hands dirty.  They moved from the picnic table to the floor and tried again.  Sophie resisted at first but eventually used her fingers to push out the messy letters, one by one.  Her OT is challenging her to work through her sensory issues.

By her last meal with a therapist for the week, Soph showed remarkable improvement towards accepting the first new food.  As the bites of banana went in easily, they got bigger and bigger.

The first bite (above) was banana.  Her only trouble was handling the spoon.  SHE’S EATING BANANA!!!  This was followed by play and a bite of mac-n-cheese.  We are exhausted and happy.