Feeding Program aka Fun With Food!
From December 2005 to May 2007 we just let Jack be when it came to eating. We would put him in his highchair with us at the table and give him cheerios, cheese, goldfish, apples and water to drink, because those were the foods he would accept and try. We were unsure of how to get him to increase is oral feedings to eventually wean off of his feeding tube. Through Robin Glass at Seattle Children’s OTPT we were introduced to Karen Quinn-Shea another Occupational Therapist at Seattle Children’s. She ran a 2 week intensive feeding program to jump start the move to oral feedings.
The 2-week intensive feeding program (Jim named it Fun With Food) consisted of having 5 meals per day (breakfast, lunch, dinner and 2 snacks). We would complete 3 of the 5 at Seattle Children’s, then come home for afternoon snack and dinner. We used positive reinforcement to encourage him to eat. If he was taking bites or drinks we would keep a movie on or use a windup toy. The hope is that over time he would not need the toy or movie and learn that eating makes his tummy feel better.
Before beginning the program we met with Karen Quinn-Shea to understand what we were getting in to and for her to assess Jack’s chewing and swallowing skills. She wanted to insure that he could successfully chew and swallow food. Luckily Jack’s only issue was not eating (some of the other children who participate in this program have other challenges.)
We began the program on Monday May 7, 2007. To make him hungrier and more likely to try to eat, we gave him an appetite stimulant and cut back the amount of formula he was getting through his tube from 35oz to 18oz. We gave him water through his tube to keep him hydrated and closely tracked his liquid and calorie intake and his weight. Not only did we have Karen working with us, but also a Nutritionist.
Here is an outline of our days.
7:45 am – arrive at Children’s Hospital and say hello to all of the fish
8:00 – get weighed and head to the cafeteria to pick out our breakfast
8:15 – sit down to breakfast
8:45 – breakfast finished, time for tube feeding and head out
9:00 – get to UVillage Starbucks for a latte
9:20 – play on the UVillage play structure
10:10 – head back to Children’s
10:30 – meet Karen for snack time
10:50 – snack finished, time for tube feeding
11:10 – check in at Children’s playroom
12:20 – meet Daddy at waiting area
12:30 – go to cafeteria to pick out lunch
12:40 – sit down for lunch
1:10 – lunch finished, time for tube feeding
1:30 – leave Children’s for the day
1:38 – Jack asleep
2:15 – arrive at home, transfer Jack and unpack car
3:00 – Mommy finally sits down
4:00 – get Jack up from nap
4:15 – have snack
4:35 – snack finished, send Jack outside to play
5:30 – Daddy home
6:30 – sit down for dinner
7:00 – dinner finished, time for tube feeding
7:10 – Jack and Daddy play
7:40 – bath time
8:00 – bedtime stories
8:10 – Jack nigh-night
8:15 – Mommy and Daddy collapse on sofa
By the end of the first week he was trying new foods and eating more quantity. Over the weekend we were on our own to manage all of the meals. During the second week we slowly phased down the number of meals we were having at Children’s with Karen to help us make the transition to being at home.
At the beginning of the program Jack was taking ~12% of his calories by mouth. At the end of the program he was taking ~75% of his calories by mouth. This was amazing progress during the program. He was able to maintain his weight. We found that he increased his variety first and then increased his volume, which is the opposite of most children. Once we were home we tracked his volume intake, weighed him weekly and checked in with Nutrition and OTPT via email. I kept charts of all of his liquids and graphed them so we could see the progress (I know, I know, but that is who we are.)
It is inevitable that he would have setback at some point (it would probably be in the form of a cold) and the true view of his progress was how he recovered from it. About 2 weeks after the program he got croup. Luckily he battled through it well and we didn’t see much of a dip in his eating. We managed to avoid a major stomach bug for 6 months and again he recovered great.
During the two months following the program we slowly decreased the amount of formula he received through his tube. By August he was only getting water through his tube to keep him hydrated. By September he wasn’t getting anything through is tube and we began the 6 month countdown until we could remove his tube. We wanted him to have a couple of illnesses and recover from them, because once we took his tube out we didn’t want to have to put it back in.
On February 26, 2008 we removed Jack’s G-Tube. It was a rather uneventful removal. You just take it out and put a band aid over the hole. GI said it may leak a little, but the hole will start to close within hours of the tube being out. So I took the tube out and Jack threw it in the garbage and said “Bye, bye tube.” (yes we have it on video).
Fun With Food was alot of work and required a large commitment, (all you do for weeks is make meals, sit with him and eat and clean up after meals) but for us it was the best thing we could have ever done. He was the perfect age when we did the program, because he was old enough to communicate and follow directions, but young enough that he didn’t understand what his tube was for. Six months later and we probably would have had a more difficult time. This was an amazing program and the staff at Seattle Children’s were wonderful to work with. The first meal we ever order for him off of a menu was at Wild Ginger (a great restaurant in Seattle.)
Now Jack is one of the best eaters we know. He loves his fruits and veggies and eats a large variety of foods. He has slowed on his willingness to try new foods, but that is part of his natural development.e are times I will look at him and think look how far we have come. If you met Jack today you would have no idea that until he was 2.5 years old he didn’t really eat.
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