The Feeding Difficulties Center

I know there are many questions and vague musings about what the Feeding Difficulties Center is and how it helped. Unfortunately I can’t easily sum it up or even explain it well. Not even the Center can do that!!!! If we’ve learned anything it’s that there is so much we will never know. It’s far more complex than we imagined. Also that even fast progress is slow.

I am writing this post for two reasons. One is to inform family and friends on how it all went and where we are now. The other is for families like us who scour and search the internet looking for any info we can get our hands on that will tell us what the heck they will do in the feeding intensive and any and all other things concerning it. I could find only one post that started to describe it but the author, overwhelmed by life I assume, kinda quit part way through and never finished telling the world about their experience. So for the second set of people, who will hang on each word like it’s necessary for survival, this will be a lengthy, more detailed post than usual. So, if you are family and friends don’t feel bad for scanning. If you are a parent in the trenches, read on and know my thoughts and prayers are with you as I write. It’s not an easy path. It’s for these families I will also lay out some of the hard stuff, emotional and physical, far more than I typically do. I am not looking for pitty or a pat on the back. Just want people heading into the same situation to possibly be a bit more prepared than we were.

Feeding History Summed Up.

Robbie aspirated from the start and had bad reflux. When we started rice cereal he would throw that up too. When we tried to go from puree to solids he would just gag and throw up. He was unable to drink from a bottle or cup. So by one year old he entered feeding therapy. For somewhere between 5 and 8 months of his second year he threw up at every single meal. Every single one. Over the next two years he learned to touch and smell foods without gagging and throwing up. He also learned how to drink from a straw cup and to tolerate a variety of purées. Then we hit a wall. 

When we took him to a gastroenterologist he was diagnosed failure to thrive and we were told about the feeding center. It's quite a process to get in. They had him do endoscopes and other tests and therapies, medicines for reflux and appetite, dealing with constipation, behavioral therapy. So many hoops to go through so that he will be as successful at the center as possible.  All the while attempting to get insurance to pay on top of it. During this we were able to transition from baby food to puréed table food but no further with actually eating solids. He was also diagnosed with hypotonia and autism during all of this. 

The Feeding Difficulties Center

We were set to enter the center in September of 2014 but a few weeks before it started insurance said they were not paying since he had used up all his OT visits for the year.

So it was pushed to early 2015.  In January we went to an ENT to check out his hearing and sinuses. They ordered a sleep study and found sleep apnea. So the tonsils and adenoids had to come out delaying the feeding center once again. So December of 2015 we finally made it in!

While there I started keeping a record of the days but stopped by day nine hahaha! So I will insert a few of those diary type entries but will leave most out since after a few days they were basically all the same.

Every Feeding Difficulties Center is different and uses varying methods. Fortunately ours uses positive reinforcement and did things along the same line as his other therapists. This was tremendously helpful. While there we were working with an OT who does the feeding, a social worker/family counselor, nutritionist, Dr’s, nurses and other staff.

Basic info

Robbie had three meals a day, five days a week there, for four weeks. They only take two kids at a time and they do not eat together. We had the second time slot so he had breakfast at 9am, lunch at 11:30, and dinner at 2:30. We had to bring small containers (4oz glad worked best) for them to send home leftovers which we then fed him in the evening when we ate dinner and on the weekends. So essentially he had 4 meals a day. Between meals they had a play room available on the same floor. We also had a private room for daily use. That was wonderful to hold all our stuff (his changes of clothing, toys he may have brought, medicines, etc), had a private bathroom and was great for nap time. We could not leave things overnight in there though since they share the room with the sleep clinic. There was also a playground type area on hospital property.  We also had use of a fridge and kitchen to keep the parents food. For families who don’t live within driving distance they use the Ronald McDonald House when housing is available. There was an orientation but we were not told this until the week before and were already scheduled to be on vacation during it. We would’ve gotten much of this info then.

A day ran like this.

Hour commute to hospital. Hope to find spot in parking garage.

Get gear and Robbie into and through the hospital (not easy when there’s a bunch of fun stuff to pass by!). Get security badge. Up to the 7^th floor. Wait for someone to see you to buzz you in.

Unload stuff in kitchen, get key for cabinet where you can store stuff overnight, unload meds in feeding room, unload stuff in room. All while trying to keep him from running off at any point to go to what or whomever has caught his attention!

Mondays they weigh in and usually a Dr or PA is there to check him over.

The Breakfast! This lasts an hour.

On to playroom, a bit of school work, play, maybe a movie.

Lunch! Another hour.

Then I eat while he takes a rest. We then go down to the playground to run out some energy.

Dinner! Another hour or so.

Usually the schedule is running late all day so we would get done about 4, pack up and get on the road.

5pm and home to Daddy and Henry! Play then bath.

Dinner time again! We had to log everything food, time, setting, behaviors, who fed him, in a folder they gave us and had to take it back each day to go over it at the center.

Of course when Daddy went with him the down times were different and more fun with walks outside and such. Also Mondays they do not feed dinner so we were able to leave earlier and went to the Science Center a few times for some fun.

They do not allow siblings at the Center so Chet worked from home for the month taking Robbie to the center one day a week and kept Henry the rest. Praise God for his ability to do that!!!!!

Exhaustion

Now I know this is not a busy day. Not crazy. It’s predictable. Somehow though it is pretty much the most exhausting thing I’ve ever done. No clue why but I could drop to sleep at any moment throughout the whole experience. I slept better that month than ever in my life! I came home each night saying I was exhausted and didn’t know why. When Chet came home from his first day there it was apparent he now understood what I meant. It just wipes you out. It’s probably the constant emotional and mental tension. Here is an example, though it did get better quickly in many aspects there were some that just stayed hard through the duration.

“Day 2

Wow. This day is rough. Gagging and throwing up right away, crying, resisting, etc. it's so hard to watch. He will catch on quick. I know he will. Just have to keep reminding myself of that. We've chosen this course and pursued it for three years. I have to give it a fair shot. I just want to smack the therapist and grab him up, hug him and run for the hills. She is doing her job and she knows how. It's not as bad as it seems, it just feels awful because my heart is so tied to him. Probably harder on me than it is on him. She had me leave the room so I am watching on the closed circuit camera. I know I'll be sobbing tonight but for now I have to keep a happy brave front. It's his birthday after all!”

Now the gagging and throwing up did not persist. She quickly learned his limits and triggers and started pushing to but not beyond the limit, while teaching him how to work through the gagging that happened so it wouldn’t turn into throwing up.

So what did they DO?

Each child is different and has his own strengths and weaknesses. For this reason they do not themselves know exactly what to expect and so they don’t tell you! They have goals but it was never outlined for us. Some of his weaknesses are sensory aversion, weak gag reflex, years of eating being unpleasant due to reflux. Some of his strengths are that he is a fast learner, laid back go-with-the-flow happy disposition, love of people and attention. When we went into the center all he could eat was smooth puree. Like stage one or two baby food smooth. Nothing stringy or textured and certainly nothing thick. Coming out of the Center he is eating moist fork mashed foods (ie muffin mashed with yogurt and some milk), thick puree and textured puree. Now we hoped that he would come out at least taking bites of some foods. We did not realize what lay between. We thought we were getting from A to E. We are really getting more from A to Z.

“First meal today went surprisingly well. Watched his videos through most of it. Minimal resistance. The food is thicker and dryer than he is accustomed to and they put it in his cheek so he is learning to move his jaw and tongue and teeth to work the food back. 

Second meal was about the same. I'm relieved he is actually getting food in him today.

Third meal a bit harder but did well.”

Robbie flips everything from the front of his mouth straight down his throat. So they were having to teach him tongue lateralization (which we have worked on prior), moving his tongue from side to side while eating. How to sweep food from his inner cheeks and off his teeth with his tongue so food doesn’t build up in his mouth. Things most people automatically do and never once think about he is having to be taught. We were also working on moving his gag reflex even farther back. Essentially the constant consistent practice, along with Dr supervision to watch constipation, weight and other issues, speeds up the rate of presenting harder foods/textures. They know how hard to push, how to deal with issues that pop up, how to prepare the food, when to pull back, what to watch for that he may or may not be doing that is working against himself. So where the kid starts and how well he cooperates, etc. determines how far he goes. The OT did not think he would get as far as he did because the resistance she saw in the evaluations. Fortunately he complies much quicker than she estimated he does. She also said that she believes if they had another 2 to 4 weeks he would’ve been taking bites of soft solids. Unfortunately they do not have the staff to pull that off! So he did better than they expected but not as well as we hoped.

What now?

That leaves us with doing our best to continue on at home with the guidance and help of his ABA therapist. She was able to attend a few sessions and meet with them to be sure we are on the right path. A lot goes in to preparing his meals now and into feeding him. Because life is life and there’s a brother who demands attention too, sickness that pops up, special occasions that we make the food easier to go faster or at someone’s house, the intensity isn’t as high. Also because I stink at pushing him in this area. Chet is waaaay better at it. My fear and softy heart get in the way. I’m learning though. Hopefully within a few months he will be taking bites. Prayers!

Robbie did fantastic throughout! He loved seeing his new friends every day and especially loved all the Christmas decorations everywhere in the hospital. The huge trees and wreaths were his favorite. Even so it was exhausting for him as well. He was much more worn out in the evenings and on weekends than usual. When he was fed up with someone or something or simply over the day he would start asking for his two favorite “things,” the Science Center and his regular OT Tiffany. Every time he was up was upset with the ladies at the Feeding Center he’d start saying “I want Tiffany!!!!” It was sweet J Because we spent every day there he didn’t get to see her until after the new year. He is happy to be going back!

One thing that was particularly helpful for me to see was how much they used distraction to help him eat without gagging. At first we used the ipad with videos he loved then moved to tons of attention and “games” to keep him occupied. As long as his mouth is doing what it needs to be he is learning the motor memory to continue improving. He doesn’t have to be paying total attention to eating. I hadn’t thought that at all.

One thing that was particularly hard was seeing him in the chair they mostly used. They started him in a regular little chair at the table but he would not stay in it and kept turning his body away to avoid the food.  Since this is not an issue at home it is not something we wanted to waste time working on at the center, so on day three they put him in a chair with lap belt and a chest pad that buckled to the chair so he was held pretty well in a straightforward position. He calmed almost instantly when put in it, seemed to like it actually and cooperated much better. It’s the type of chair you see severely disabled children wheeled around in. Sitting back watching him in this chair being fed pureed food by a professional at 6 years of age reality smacked me again and it took everything in me not to break down sobbing. There was no denying in that moment that he is a special needs kid. In spite of his diagnosis I tend to forget or doubt that he is. You just live life day to day and work around what needs to be, see the progresses made and rejoice in it. And it’s life. It’s normal for us. Then we are suddenly jarred into the rest of the world by seeing him with other kids his age, something we see on TV, a comment made, or this time the chair. It’s hard. Hard to know he has to work so hard at what the majority of the earth takes for granted; hard to see what we miss out on, what he misses out on; hard to not know if he will be able to lead a typical life at some point. Chet and I both got tripped up emotionally by the chair, it just represented this whole journey we’ve been on.

Many emotions were stirred in the midst of Feed Center: nervousness, anxiety, fear, hope, anger, joy, and more. The kids, as well as Chet and I, got ornery quite a bit dealing with the household upheaval. We had Robbie’s birthday at the beginning and Christmas at the end. Made things more pleasant in some ways but curtailed much we would do for both at the same time. It was a roller coaster of a ride and now that we are done we ask ourselves if it was worth it. It was. We believe it and many professionals have concurred. We just wish we could’ve done a few more weeks.

If you are a parent looking into a feeding intensive or feeding difficulties center and looking for info, I hope this gave you a bit of what you were looking for. I know all kids are different and your circumstances aren’t ours. Most kids who do these have a g-tube and for that reason there is a lot more info to find for those who have gone through with those issues. For those like us though – not so much. Best advice I can give is to ask the center or Dr’s a ton of questions. Write them down when you think of them, brain storm with your spouse or friends or other professionals, take in your list and write down your answers! Never be afraid to ask any question, no matter how small or dumb it may seem. Be sure to pay close attention to what they are doing so you can replicate it at home. We requested to be shown how they prep the food, so each of us had a session with the nutritionist who taught us how they go about making it the consistency they do and how to continue the progression. They expect you to work hard at home and keep on top of it during and after the Center to keep the progress going. Have support on hand and don’t expect too much of yourself for the duration of the intensive. It takes a lot out of you. The other set of parents who were there when we were agreed whole heartedly. I hope and pray it works out well for you.

Family and friends keep praying. He has a lot of work to do still but is carrying on like a champ. Now that he is over being sick from last week we are upping the challenge again and it was rough on him today. Pray specifically that chewing “clicks” with him and he continues at a steady progression. Thank you all so much for the love and prayers you’ve already given! We are truly blessed!!!

Ok, what did I forget? Questions? LOL