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Tuesday, May 29, 2012

Feeding therapy is not for sissies


*Note: The following post will probably be long, boring and consist of a lot of whining and complaining because sometimes I just need to, but I'm not looking for sympathy or compliments on how awesome I am and I do realize that a lot of people are much worse off than we are and am grateful for everything wonderful in my life, etc. :)

Sometimes feeding therapy just stinks. I love our therapist, I love my daughter, I'm forever grateful that someone decided to create feeding therapy, but sometimes I just hate it. Here are a few reasons why:
  1. Progress is very slow and there's a lot of "one step forward, two steps back"
  2. I thought I'd gotten really good at being patient but have realized that there are many different kinds of patience and I have yet to develop the kind that feeding therapy requires
  3. Some days, it feels like we're torturing her.
  4. Some days, it feels like we're torturing ME.
  5. Some of the things we have to do with Raya go against all of my instincts and 9 years' worth of parenting experience
  6. It reminds me that I'm part of Raya's feeding equation and therefore also part of the problem (and who really enjoys analyzing their parenting faults with a specialist once a week for 50 minutes?!?)
  7. It. Is. HARD to turn a non-eater into an eater!!!! The things we learn in therapy seem small and simple enough but actually putting them into practice consistently at every snack or meal every single day is SO HARD, and each FT session is a reminder of all the things we should be doing better at and aren't.
I really didn't have high expectations going into today's FT session. Raya is still not quite back to her previous self after trialing her on milk last week. Her diarrhea is gone now but the personality changes and eating changes are still lingering. Since we took away all dairy products (which included her precious "sour cream"/Greek yogurt) she's not too interested in eating much. She says no to just about every food we offer, no matter how it's offered to her (meaning, whether we ask her if she wants some, tell her to take a bite of something, etc.). Normally she will say yes to goldfish crackers or ask for them but she doesn't want those either. In the past few days, she's eaten tortilla chips, peanut butter, a sour cream & cheddar chip, bites of my tortilla, and spicy salsa that I made this weekend. She ate that off of the spoon and didn't even flinch like the other kids. :)

Today was the kids' first official day of summer break so we all went to a movie this morning. The theater was a little overwhelming for Raya. Thankfully instead of having a meltdown, she just got really clingy and spent the entire movie shoving popcorn in my mouth and stabbing me in the face with the straw as she was trying to give me drinks. :) Oddly, even though everybody else was eating popcorn, she refused any that I offered her (after I bit the hulls off so she wouldn't choke on them). Normally if I'm eating something and offer her a bite, she takes it. It's also very out of character for her to want to just sit on my lap for any length of time. Her respite provider was with us and she even kept commenting on how strange Raya was acting.

Her OT was gone today so we didn't have that appointment before FT like we normally do but there wasn't time for a nap in between the movie and therapy. By the time her therapist came she was one tired and crabby girl. Well, until she heard the knock on the door. Then she got all happy and hurried to the door. She loves that most of the time when someone knocks on the door, it's for her. :)

Since the only thing that's really appealed to her this weekend is chips & salsa, that's what we gave her for FT. We've seen a change in some of Raya's behaviors surrounding eating. Being that she is 2, she's developing the independence and stubbornness of a 2 year old and that really complicates trying to get her to eat. Some of the struggle with Raya learning to eat is now of a behavioral nature where before, it was just a lack of knowledge, skill, & motivation. All of those things are still factors to varying degrees, but some of the behavioral elements are starting to emerge more.

She's learning that certain things get attention, even if the attention is in the form of us doing what we've been taught to do with therapy. For example, our recent focus has been on making sure Raya is emptying her mouth before taking another bite. For the last couple of weeks whenever we're eating, we only give her a small amount of whatever she's interested in at that meal and when she asks for more, we remind her to clean her mouth. (with the exception of Applebee's last week when we let her cram as much as she wanted into her mouth so she'd be happy & quiet while the rest of us ate lunch. sometimes you just have to appease.)

Either we ask, "Is your mouth clean?" or we just say, "Clean your mouth first and then you can have more." Sometimes she will rub her throat with her hand and make a gulp noise like she's learned from watching her therapist's cues to show us that she's trying to swallow, but other times she shakes her head no, acts silly, or just doesn't do anything at all. Ever since she started experimenting with food, she's enjoyed the sensation of having food on the tip of her tongue and is content to keep the same food in her mouth for hours. (literally. her record is 4 or 5) If she's still on the same mouthful when everybody else has finished their meal or if we've run out of time to sit & wait for her to clean out her mouth, we make her spit it out into a napkin. Today her therapist decided that we need to change our direction with that because it's not accomplishing what we want it to. (this is where it gets not-so-pretty)

So Raya got a good little "bolus" of food in her mouth and decided just to let it sit there for a while. Her therapist gave her verbal cues for chewing and swallowing a few times and gave her a sip of water, but Raya kept the food in her mouth. When she asked for more chips, her therapist reminded her to clean her mouth. When Raya persisted, her therapist looked down at the floor and bowed her head so that Raya couldn't have eye contact with her. The idea was to not give Raya the interaction that she was trying to get because it would reinforce the behavior of not swallowing. When her therapist didn't give her the attention she was looking for, she looked at me to try and get it from me, so I did the same thing as her therapist. She gave Raya another drink of water and encouraged her to swallow, but Raya still kept the food in her mouth.

After 20 minutes, Raya still had the same food in her mouth. (and there were JALAPENOS in that salsa!) By then, she was starting to get frustrated. She really didn't want that food in her mouth anymore, especially since she also had a lot of water in her mouth, and she wanted us to fix it for her. Half an hour of consciously and intentionally ignoring her requests for more food or help getting the food out of her mouth was very unpleasant, especially towards the end when she was crying and reaching for me while food dripped out of her mouth. Thank heavens she doesn't gag much anymore or it would have been a pukefest.

Finally, she couldn't hold it in anymore and started to spit the food out on her own. Her therapist handed her a paper towel so she could clean off her own tongue instead of having me do it for her. Since she hadn't ever swallowed the food like she was supposed to, I had to ignore the crying and keep it all business so that I wasn't reinforcing the behavior and rewarding her for it. As soon as she was out of the high chair, she wanted me to pick her up but I didn't (see what I mean, against instincts) and instead, I redirected her and took her by the hand to the sink so we could wash off the salsa that she smeared all the way up past her elbows. I put her back down again and she wanted up again so I redirected again by taking her to get a clean shirt on. That was enough of a distraction that she stopped asking me to pick her up but was still being whiny. She perked up a little bit when it was time to say goodbye to her therapist. :)

*sigh* So back in the beginning when Raya first had her NG tube, we were completely clueless that getting her to eat would be so hard. When oral feeds were taken away completely, we still didn't comprehend the fact that she was going to have to work so hard to make up for missing so many vital stages of oral development. Even though logically we knew that it would take some work for her to learn the mechanics of eating, I don't think we had even an inkling of the degree to which things like motivation, desire, appetite (or lack thereof), and her screwed up tastebuds would factor in. (because let's face it, what 2 year old LIKES salsa and plain Greek yogurt all by themselves) This is taking SO much longer than we thought it would and is so much harder than we thought it would be.

Lately I've seen comments from a few parents who are brand new to tube feeding talking about how they're hoping to be off the tube in a few months or asking how they can make sure their tube-fed baby will still want to eat solid food and I'm sad for them and it's all I can do to stop myself from crushing their hope with a dose of reality. I used to be that mom who naively thought the tube would be a temporary sidekick for a couple of months. I know there are kids who do only end up needing a tube for a matter of months and sometimes less depending on the reason they have it. As much as I'd love to be able to tell them that everything will be fine and if they just do x-y-z, their baby will be back to eating in no time, the fact of the matter is that none of this is an exact science and it's something that nobody can predict or control. I hope that EVERY brand new tubie parent will cling to hope that their child will be one of those kids. I also hope that they will not feel like failures if their child needs it longer than that. If you're a new tubie parent, do whatever you can to encourage whatever oral exercises are allowed (chewing on toys, sucking on pacifiers, eating/drinking what they can) as often as you are able to keep them interested in food and eating, but realize that in the end they just might not want to eat no matter what you do. To be brutally honest, and forgive me for doing so, but trying to turn a kid who used to vomit at the sight or smell of food into a kid who eats is awful. Sometimes it just plain sucks trying to force a kid to do something that they really don't want to do. Especially when it's one of the most basic and fundamental functions of life and there are no longer any obvious medical reasons why they shouldn't be doing it. (although there might still be medical reasons that we're unaware of)

At the very beginning when people would ask us how long Raya would have the tube for, we used to say that it would probably be a month or two but could be longer. We honestly believed that but then as the months went by, we started to say that it could be a year or two. Then we started saying that we'd be thrilled if she got off the tube by the time she went to kindergarten. Now we're halfway there and I'm starting to have my doubts about even meeting that imaginary deadline. Some days I think she will, but then there are the other days when I sit and watch her hold the same mushy tortilla chip crumb in her mouth for half an hour and wonder how she will ever be able to eat all the calories, drink all the fluids, and take the medications she needs completely by mouth EVERY SINGLE DAY. It seems like pretty tall order for a kid who can barely hit 100 calories a day lately. Sometimes I wonder if this part of the journey would be a little easier if somewhere along the way we had been told to never expect Raya to be able to eat orally because then even when she only eats 5 calories a day, she'd still be exceeding expectations.

(If you're a new tubie parent who happens to be reading this, I'm SO sorry that you caught us on a bad day. :)

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