NEVER IN A MILLION
If someone would have told me six years ago when I was pregnant with my first child that I would spend countless hours by his side as he learned to accept and eat food, I never would have believed it in a million years. If someone would have told me in spring 2010 that I would spend the next four years taking my son to hours and hours of feeding therapy, I absolutely would have believed it. Within Brady’s very first year of feeding therapy, I quickly realized the often agonizingly slow process that is feeding therapy.
In a word, it’s frustrating. Progress is baby step by baby step with several steps backwards before real movement forward. There are setbacks. There are successes. There are more setbacks. And the pattern goes on and on.
We’ve been at this feeding therapy game for well over 4 years with very little progress, until recently. We’ve tried feeding therapists with all sorts of different backgrounds and education from feeding teams, to occupational therapy, to behavioral psychology, to speech therapy. Each therapist approached Brady a little bit differently. And each therapist didn’t get very far in a several month time span. One therapist admitted that after seeing Brady for four months, she was officially “stuck”. Yep, welcome to our world.
A few lessons we have learned along the way. One, don’t expect miracles overnight. Two, there absolutely has to be a connection between the therapist and child. Three, if I (as the parent) dread going to therapy and oftentimes leave feeling defeated and helpless, it’s time to move on. Because afterall, if I’m miserable, how miserable must Brady be feeling? Four, you have to give each therapist a solid chance. Never go just once (unless the connection is really that bad) or twice and stop going. The thing with feeding therapy is persistence. It’s not for the weak. It’s about powering through all the frustrations, setbacks, and limitations to get to the ever so elusive end-goal… eating food.
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| I was elated when Brady said he wanted to try pizza. I made him a safe pizza that he could eat. It started out okay, but quickly went downhill from there. This is a pretty typical day. |
THERAPY FOR THERAPY
Sometimes I leave Brady’s feeding therapy sessions with an intense need for therapy myself. Not for feeding, but to unload and emote after yet another horrifying feeding therapy session. The emotions and frustrations that occur in a 45 minute window can be intense as I watch my son struggle and fight against taking the teeniest, tiniest bite of food that is out of his “comfort zone”. And by definition, just about everything is out of his comfort zone with the exception of Goldfish, toast, and French fries.
Therapy was especially difficult when I was taking Brady to his weekly feeding sessions with a behavioral therapist during the fall 2013. Just painful. Not only was there no connection between this particular therapist and Brady, but I had come to dread driving him to his appointment. It was the worst therapy has ever felt. The approach was so negative that I would oftentimes witness Brady lashing out and transforming from a 5 year-old little boy to his former two-year-old self. All of a sudden the tantrums were back in full force, food was being thrown on the floor, he began spitting again and overall acting like a terror for each 45-minute session.
We did this routine for four months before I said enough was enough. We weren’t getting anywhere and I didn’t like the negative place this therapy came from. Everything was in a form of punishment. There was no getting down on Brady’s level. There was no real motivation for him to succeed.
It was about this time I came in contact with another mom in the area whose son was also receiving feeding therapy. She gushed about their new therapist. She was absolutely elated at the quick results they had seen in such a short amount of time. I was intrigued and placed a call to see if there was an opening and to see if this feeding therapist was for real.
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| Brady with his new feeding therapist, Miss Stacy, during Feeding Tube Awareness Week. Stacy even bought a t-shirt in support of her tubie buddies! |
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| Brady and Miss Stacy checking out his ice cream tongue in the mirror. |
A NEW YEAR, A NEW WORLD
Thankfully, she had one opening left and Brady started feeding therapy with Miss Stacy in January 2014. This therapist has been life-changing. I sometimes refer to her as being “magical”. I know deep-down there is no magic involved, but what she has gotten my son to do over the past few months have been absolutely astounding. I remember Brady asking me a few days after his first session with Miss Stacy when it would be Tuesday again. I asked him why he wanted to know, and he excitedly replied, “Because that’s when I’ll see Miss Stacy again!” Wow. He has never, ever been enthusiastic about attending therapy, much less counted down the days until the next session. We were off to an amazing start with his new therapist and I had hope again… something I had painfully lost in the fall with the previous therapist.
BRADY'S FIRST TIME TRYING SEVERAL NEW FOODS AT ONCE,
INCLUDING SLIM JIM
TEENY, TINY BABY STEPS
Brady started to make progress with Miss Stacy almost immediately. She challenged him. I’m not sure if his positive response to her was from their immediate bond, or Brady maturing and having the ability to be reasoned with, or a little bit of both. My hunch is the latter. Brady went from not being willing to even entertain the idea of putting anything in his mouth but a piece of toast, Goldfish or French fry to taking the teeniest, tiniest bites of banana and gummy worms. Huge success! We progressed to popsicles within a few weeks and rice chips and wheat thins soon followed. From there, Brady has progressed to taking tiny bites of Slim Jim. Slim Jim! Completely out of his comfort zone.
Another big day was the introduction of slushies. For over two years, and ironically, ever since he had the PEG feeding tube inserted, Brady gave up apple juice (the only juice he was willing to drink) and went to drinking ice water only. The introduction of slushies was quite the big deal. Granted he only takes a few small sips, but that’s progress folks. We’ll continue to introduce new flavors of slushies and juices, one small sip at a time for several months to come.
BRADY'S FIRST TIME TRYING AN ICEE SLUSHY
MICKEY D’s, PLEASE
A few months ago, nothing short of a miracle occurred. It was late in the evening, very close to bed time in fact, when Brady looked over at me and said, “Mommy. I want to go to McDonald’s to try their chicken nuggets.” Say what? Brady never asks to go to restaurants and even though it was bedtime and we had already had dinner, I didn’t think twice about packing up the family for this momentous event two miles down the road. Although I will admit I had a nagging thought in the back of my mind that Brady was trying to stall going to bed. He’s smart that way.
Then, another wonder happened. Instead of going through the drive-thru as we normally do because Brady hates sitting in restaurants most of the time, Brady actually asked if we could go inside to eat. Once we were inside, Brady and his sister made a beeline for the Happy Meal toy display. Well crap. Two thoughts went through my head. One, he’s stalling going to bed. Two, now he’s only saying he wants to eat chicken nuggets to get the Spiderman toy on display. Still, I kept the dream alive and ordered the four-piece McNugget Happy Meal.
Once we sat down, Brady tore into his chicken nugget like no one’s business. My husband went to grab some ice water for him and by the time he returned with the drink, Brady had already eaten over half the chicken nugget! It was as if Brady had been eating chicken nuggets his whole life. This was Brady’s first meat in over four years. Brady ended up eating two whole chicken nuggets that evening and I remember sitting in the middle of that McDonald’s with tears in my eyes in utter amazement.
McDonald’s has never felt so special. Two chicken nuggets may not seem like much to most people, but to my husband and me, it was a moment. That night something changed. Over the past four years, I have seen Brady taking the smallest of baby steps and on this evening, he made one giant leap.
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| Brady at McDonalds trying chicken nuggets! |
PROGRESS, ONE SMALL BITE AT A TIME
That evening was so surreal, that I wondered if it was just a fluke or if we really had turned the corner. My hope was back in full force and I didn’t want it to slip away again. I am happy to report that we continue to make progress with Miss Stacy’s help. We’ve recently introduced pasta, coconut milk ice cream, coconut milk ice cream bars, coconut milk yogurt, rice milk, and even hamburger. Brady continues to try new things every week in therapy and that is huge progress. Before, he would barely entertain the idea of bringing most foods up to his lips or even nose to smell. Now, Brady is taking small bites… but they are bites nonetheless and we will take it.
The foods that we have introduced by no means are enough to sustain his daily nutritional needs. For so long, Brady has ingested so very little at meal times that he gets full quickly and can’t each much at one time. However, we want to get to a place where meals become actual meals and enough to sustain him. In the meantime, we offer his newly introduced foods at meal times, then give a bolus to help supplement the rest of his caloric needs.
BRADY TRYING MELTED POPCICLE FOR THE FIRST TIME
(this was a long way from only drinking ice water)
BRADY'S FIRST TIME TRYING HAMBURGER
MAKING FOOD FUN!
THE ROAD TO TUBIE GRADUATION
It’s a slow process. It also means his feeding tube is here to stay for years to come. Brady surpassed his two year feeding tube anniversary in May 2014. I’m thankful we have the feeding tube to help ensure Brady is getting everything he needs to continue to grow and thrive. But I so look forward to the day when he becomes a “Tubie Graduate”. That will be a huge celebration. But first, there is lots of work ahead of us. The road to tubie graduation will certainly have its bends and turns and detours and dead ends. The road won’t be easily traveled on most days. But we’re all-in on this road trip, no matter where it takes us.
In the meantime, we will take the time to celebrate each newly introduced food. We’ll celebrate each successful feeding therapy session. We’ll celebrate the fact that Brady is becoming more open to trying new things.
And most of all, we’ll celebrate taking leaps of faith along the way.
