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New perspective on feeding therapy, eating, and "eating"

(Alternate title: today I feel the need to complain/vent/get it all out)

Sometimes when we think we have it all figured out, reality hits us in the face and we realize we don't have a clue. Well, maybe a clue but definitely not the whole picture. When I brought Raya home from the hospital with an NG tube, I naively believed that she would only have it for a couple weeks or maybe a month or two at the most while we got her reflux under control. And maybe if there had been a quick resolution to her GI problems, that would have been the case, but there wasn't. It took me a long time to finally comprehend that the tube was there to stay. Once I finally realized that, I still naively believed that she would need a tube for a year or two but then she'd be able to get rid of it. I also naively believed that resolving her visceral hyperalgesia (hypersensitive gut) and chronic vomiting was the biggest hurdle we had to clear. Wrong-o.

Now here we are, 2 years, 1 month and 1 week after her initial NG tube placement and I am finally starting to realize that although I'm pretty sure we're IN the tunnel and I do BELIEVE that somewhere there's a light at the end of it, we are nowhere near it. She doesn't fear food like she used to and sometimes she's genuinely interested in it which is fabulous, but she is not an "eater" yet and I don't feel like she's really anywhere near that level.

I've been accused at times of being a pessimist when it comes to Raya. I said something once about "Next time she's in the hospital, blah blah blah" and was told, "You shouldn't be thinking negative like that! You should say 'IF she's in the hospital again...' instead." People who I know mean well say things fairly often like, "One of these days she's going to be eating everything in sight and this will all be a memory." My responses to things like that might come across as negative but what people need to understand is that for me, life as I know it with Raya is a reality. She's doing great, but it IS realistic of me to believe that at some point, she could be back in the hospital. We've been extremely lucky with her so far and she hasn't had any trouble with her G tube site (infections, etc), but the reality is that she is still being fed through a piece of medical grade silicone that's implanted through her abdominal wall into her stomach, and there are risks associated with that.

As for the comments about eating, I understand that people are trying to be supportive but the reality there is that Raya is no closer to being able to sit down and eat a full meal than I am to being a professional golfer. I've whacked a few golf balls with a club before and if I had some practice, I could probably play a decent game of golf, but there is no way that the little bit of experience I've had makes me anywhere near the level of a professional golfer.

The same is true with Raya. She's dabbled here & there with food. She HAS actually eaten some and for a while, she was eating a significant amount of calories with about 1/3 of her daily requirement coming from food, but that doesn't make her anywhere near the level of a true "eater". She will probably make some leaps & bounds at times with her eating, but this is going to be a long, slow process. Think of it this way: If you're trying to get from point A to point B, you need to take the train that goes between them. If you catch the train at point A, you'll get to point B on schedule and pass all the mile markers in between them. However, if you miss the train at point A, you'll be forced to take an alternate mode of transportation. Not only will you not get there on schedule, but you will miss all the mile markers and you will have no way of knowing how long it will actually take you to arrive at point B.

There is a "normal" route for children learning to eat. If there are no disturbances that keep them from learning to eat on schedule, they will meet all of the milestones of oral development on schedule and by the time they're a toddler, they'll be able to sit at the table and eat a meal. However, if they miss that train at point A, then they are forced to learn the hard way. Instead of taking a train to point B, they're stuck riding a swaybacked old burro named Pepe' who can only turn left. They CAN still get to point B, but it's going to take a lot longer to get there and the journey is going to be rough and smelly with a lot of unscheduled detours.

Today, I've been feeling a little bit like ol' Pepe' just made one too many left turns and got us WAY off course. And then on top of that, I also feel like maybe we weren't where I thought we were anyway. We had feeding therapy today and don't get me wrong, I love both of our FTs and I'm so grateful that Raya is able to have feeding therapy, but honestly I feel a little discouraged after every session no matter how well it goes. Every FT session is a little reality check, and that's a good thing and a bad thing. It helps when I see Raya eating (meaning actually swallowing) things that she won't normally eat. She IS making progress on learning each component of eating (biting, chewing, swallowing) and we are light years ahead of where we were a year ago. Then on the other hand, I feel like what we do at therapy is just a tiny drop in the bucket compared to where we'll have to be in order for Raya to not need a feeding tube anymore. Eating a couple tablespoons of something with the feeding therapist once a week really isn't much in the grand scheme of things.

It's hard to even quantify or measure progress with eating. Sure, you can count calories and measure quantities of food ingested, but those aren't the only factors involved. Raya was eating as many as 350 calories in a day before she got sick a couple weeks ago and now she's back down to less than 100, if she eats any at all. On the other hand, she's been doing better with chewing the things that she does put in her mouth. She's chewing well enough that when she spits out everything she puts in her mouth, it's been pulverized into a nice goo.

Today's therapy session went great. Raya did pretty much everything her therapist asked her to do. She chewed on the chewy tube, she let her do some brushing inside her mouth, she played tug-of-war with the wet washcloth in her teeth, and then she even let her therapist feed her some plain Greek yogurt. They took turns putting some in Raya's mouth. Raya wouldn't really take any off of her own spoon but she'd take it from her therapist's spoon. She ate almost a whole tablespoon that way and then they moved on to strawberry flavored applesauce. Applesauce is one thing that Raya has never had any interest in eating whatsoever. She's tasted it before and that was enough. Today though, since they were making a game out of it and since it was mixed with the remnants of her yogurt in the bowl, she let her therapist feed her about 2 tablespoons of it.
Does this mean she likes applesauce now? No. Is it possible that she'll eat it again tomorrow? Yes. Is it likely? Not really. (See, that makes me sound negative doesn't it.) The reality of it is that I am not Ms. C the feeding therapist, I'm Mommy. I'm not the fun ladies that come to the house to play with her once a week.

One of the struggles with turning a non-eater into an eater is that most of us have no comprehension of what it's like to not know how to eat, to not understand the connection between sensations in the stomach and eating, and to have no desire whatsoever to go to the exhaustive effort of eating. As much as I try to see things the way Raya sees them, it just is not possible because I have not experienced that myself. Even though I feel like I'm pretty laid back with my expectations of her and I feel no need to rush her into eating when she clearly is not ready to be pushed faster than her own pace, it's hard for me sometimes to gauge that pace. Some days it seems faster than others. This experience is just as new for me as it is for her and neither one of us really has a clue what we're doing! :)

Her FT and I were talking today about how the emphasis still needs to be on making food a positive experience for Raya. She has made great progress but there are still a lot of walls that need to come down for her. As tempting as it is for me to focus on the calories & quantity of food Raya is consuming, I need to take a step back and focus on making food enjoyable and helping her improve her technique. (side note: in 5 years of coaching high school pole vaulters and drilling technique into their heads, I never imagined I'd have to work with a 2 year old on her eating techniques.)

So that's my new perspective on feeding therapy/eating: Right now, it's not about calories, it's about food being her friend and gaining the skills necessary to eat it safely. I'm choosing to stop straining to see the light at the end of the tunnel and instead, I need to just keep putting one foot in front of the other and keep walking in that direction. Eventually, we'll get there.

Now comes my public service announcements for the day. There is a difference between eating and "eating". If you see a tube-fed child stuffing food in his/her mouth, PLEASE don't take that as the child actually eating. Whenever we're out in public and someone sees Raya take a bite of something, it's almost always followed by someone asking me, "Oh, is Raya eating now?!?" No. She may appear to be eating, but she's not. This video is a prime example of what I'm talking about.
video
(Do you like how Raya won't stay off the table now? None of us get any peace during mealtime unless that child is in bed or strapped into her high chair. I am obviously not an adequate substitute for a licensed occupational therapist and we can't WAIT to start OT again after 2 1/2 long weeks without it but that's a whole other post.)

So yeah. A child who looks pleasantly plump and is shoveling food into her mouth could easily be mistaken for a kid with the ability to eat but really, this is a child who is stuffing food into her mouth to get the sensory input that she's looking for. What I didn't video tape is the part half an hour later when I had to physically restrain her to dig the food out of her mouth because she's not capable of chewing & swallowing it and that was never her objective in the first place. She "eats" food, but she doesn't actually EAT it. There is a lot of biting, mushing food around, an occasional swallow, and a lot of holding food in her mouth for a long time and spitting it back out.

*Sigh* Where am I going with all this? I don't know. I guess it's just been a frustrating day. It's hard not to feel like Raya's lack of progress (and let's face it, regression) lately is a reflection on me. Some days, I feel like there is too much being asked of me. We have all of these wonderful therapists who give us great home programs to work on and schedules to keep that I know will help Raya but reading them on paper and putting them into practice are two entirely different things. Not to mention that Raya isn't a very willing participant when I'm the one trying to do them with her. Add in the 3 other kids and everything that I SHOULD be doing with all of them and I don't come close to accomplishing ANY of it. Don't get me wrong, I love all 4 of them dearly and everything that comes with them and I know I need to stop making excuses and try harder.And really I'm NOT looking for sympathy or pats on the back or anything, I just feel like whining today.

Comments

  1. Well, I'm not sure what to say then, but I think you're awesome!

    ReplyDelete
  2. You are so allowed to whine, your normal and its okay. I have those days-there's been A LOT lately-where I feel like a totally inadequate, terrible mom, who is going through the motions and getting no where. Then add in all of my health junk, homeschooling Collin, potty training Caiden, trying to encourage learning with Caleb and everything else ......I suck!! I totally get it. I'm not on that train, but I'm on another one and its taking too dang long, and much too stressful. I'm glad you vented, you are awesome, and I'm glad we are friends. I wish we could get together and have a good ol'mommy pity fest with Alix and Alicia. I think we need to schedule one, it would be good for all of us. I know we can squeeze it in somewhere :) (((hugs))) I hope I didn't add to your rain cloud and that I made you smile and reminded you that your normal and not alone <3

    ReplyDelete
  3. I have recently discovered your blog and been reading back-posts recently. I needed this one today and am so glad I came across it, though so sorry you have had and are still on this journey. My 2 year old is getting a PEG this week after 18 months of struggling with oral aversion and reflux and now diagnosed with a bad swallow so NG fed. It is so difficult to articulate to people who blithely say "oh they'll be eating soon, it'll just click!" when they haven't experienced the everyday. Roll on that light at the end of the tunnel, for us all x

    ReplyDelete
  4. so very helpful! i have a brother with Down Syndrome that because of medical accident can no longer eat via his mouth and has a mic-key G tube..prior to the procedure that lacerated his esophagus thus resulting in him needing to be tube fed, he had difficulty eating, would choke and sometimes aspirate and end up with pneumonia and lengthy hospitalizations..with his tube none of that happens to him now. we have had several video swallows that tell us he will need to be tube fed the rest of his life. I have learned much from your Facebook page and thru your blogs that have helped me care for my brother and understand better what he is going thru.. thank you for taking the time that you do to share your struggles and victories .. you are awesome!!

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