Happy Mealtimes

Happy Mealtimes is an month-long intensive feeding therapy program for children who are unable to transition to eating normally with other methods. Kyle had to meet certain criteria to even be considered for this program including a referal from a medical doctor stating the need for the program, having completed outpatient feeding therapy without success, the OPMS (swallow study) showing that he had no medical condition preventing him from taking food by mouth safely, and even being on a very specific schedule for when he receives his tube feedings during the day. The application for the program required video of attempts to feed Kyle both in the therapy setting and at home and a 72 hour log of food intake. Once we turned in the application, it took a while for them to review it and determine his eligilbility for the program. As they are currently only able to provide this program for one child at a time and it is a month-long program, the waiting list was very long and they first gave us a tentative start date of September of 2011! We were very excited when we got the word that there was an earlier opening in the program for this year!

Monday, August 16th was Kyle's first day in the program. We arrived at the Sexton building (located between the old Physicians Office Building and the new parking garage) at 8:00 am for his initial assessment. We met with Allison and Cara, the feeding therapists for the program, on the fourth floor. To get an idea of how an attempt at feeding normally went, they had me go in therapy room with him and try to feed him while they watched from a smaller adjoining room through a mirror/window. Kyle didn't cooperate, as usual. When time was up, Allison and Cara came back in, gave some feedback and what to expect during the program. I was given a welcome packet with information about the area, a map of downtown St Petersburg, a map of the hospital, information on Ronald McDonald House, tickets to Great Explorations museum, a coffee perks card for the cafe downstairs and an itenerary for the next four weeks.

Next, we went downstairs for him to be weighed and measured by Sandra, the dietician and to discuss his diet. He will be weighed and measured every Monday to compare to to previous week and to monitor any weight gain/loss during the program.

At 10:30 am, we went back to the fourth floor for a snack-time feeding session. This time, I watched from the observation room while Allison fed him. She started in slow, giving him toys to choose from ("Do you want to play with this toy or this toy?"). She asked him to show her ah-mmm's with a spoon, where he opened his mouth wide for the spoon, then closed his lips and pulled it out with nothing on it. She progressed gradually to dipping just the tip of the spoon in yogurt and kissing the spoons or even doing ah-mmm's. Each time, he'd choose from two toys which he wanted beforehand and he'd be rewarded with the chosen toy. She also used a juice box and gave him choices like, "Do you want 1 sip or 3 sips?" and he'd drink the chosen amount of sips. Each time he tried to distract or refuse, at the first sign of resistance she'd distract him with choosing between toys and he'd seem to forget that he was about to refuse.

After the session, it was time to head downstairs to the third floor to meet up with the occupational therapist, Roseann, and go to the occupational therapy room down on the second floor. Occupational therapy doesn't work on trying to get Kyle to actually eat. They do more to do with his aversion to certain textures or having things in his mouth at all. So they have him try to bite foods like fruit loops in half but he doesn't have to swallow the peices. He can just take them out. Or they might have him fingerpainting with pudding on the table but not eating the pudding. That type of thing. He did not like this first day of occupational therapy. He cried and screamed at Roseann quite a bit during his hour session.

After occupational therapy, we headed back upstairs for the lunch feeding session with Allison. It went smoothly and he gave no signs of resistance.

After the Noon feeding session, we had 2 1/2 hours to kill before the next session. I was so tired already. I had worked my usual 11 am - 11 pm shift the night before and had been up early to get all the last minute things packed up and get out of the house by 7 am. We went to get some food for me and checked out the Family Resource Center in the OCC (Outpatient Care Center). In the Family Resource Center, they have a book shelf full of books donated by employees that are free for patients/families that want them. We grabbed a few books that Kyle liked as well as some books that he thought big sister Hannah would like.

At 3 pm, Kyle had his last session for the day, a snack. He did so well. He acts like it's no big deal to drink the Boost Kids Essentials instead of having it through the tube and he even took spoonfuls of pureed food like it was no big deal!

During the week, we had arranged to stay at Chris's parents' house so that we don't have to do so much driving and we don't have to drive so far in the morning rush-hour traffic. So Kyle and I went to their house and both fell asleep on the couch. It had been a very busy day. I woke up a little later but Kyle was out like a light and we weren't able to try dinner with him his first day. The rest of the week went pretty similar - 8:30 breakfast, 10:30 snack, 11:00 Occupational Therapy, Noon lunch, 3:00 snack. But each day, he did a little more - more sips of the Boost, more spoonfuls of pureed foods, more cooperation. They started bringing me in for one of the sessions a day the last couple days because he was doing so well and they said they wanted to focus on him cooperating with me as well since the transition to home feedings had been the challenge in the past. He was still pretty cooperative and they watched from the observation room and gave me feedback afterward such as not to use yes/no questions ("Can you take a big bite for me?") and giving more positive verbal comments ("That was a good try. Now lets try again to get all the food off the spoon." instead of "Not quite. Try again.").

We're only a quarter of the way through the program but he's already taking a large part of his daily nutrition (even if it is almost exclusively liquid still) by mouth. I'm excited to see how far he'll come in the second week. At the same time, I'm worried that I might get sick of All Children's Hospital pretty quickly between being there 5 days a week with Kyle and being there working on the other two days.