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.

(sigh)

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.

1 comment:

Joyce Ely said...

Big bear hugs for both of you. That is so rough and tough to watch. If it helps any, that used to be Sarah in speech therapy. I had to stop watching and instead stayed in my car listening to music which maybe looking back is ironic because it took music therapy for her to learn to talk. Hopefully, the end result will give you and Sophie some improvement.