If you are here because you’ve followed a couple of my earlier posts about SPD or other feeding issues, I’m sorry it has taken so long to mention it again. We have now been in feeding therapy for several months. Our OT is great and works with our schedule, so we typically see her every two weeks. My goal had been to go every week, but it seemed every second week it wouldn’t work for some reason or another, so I cut us some slack and we settled in.
I have a love/hate relationship with posts of this nature, because I want to help other families without giving license to well-meaning third parties to ask about our progress. If you may bump into us IRL, and you do not have a child with feeding issues, please, I beg you, do not ask. Outside pressure was the NUMBER ONE reason that it was difficult for me to accept the tube and where we are at. The glances, the grimaces, the questions. Just don’t.
Where are we at with tube feeds? S has a J-tube, not a G, not a G-J, just a plain old J. This means that her tube goes directly into her small intestine and bypasses the stomach entirely. For this reason we are not able, and will never be able, to bolus. There is not the room. The time commitment for her feeds is therefore a lot greater than kids that can take a whole meal by syringe, etc. We do only overnight feeds and have increased our rate up to 100 mls. We turn on the pump at bedtime, and if we’re on schedule, it will be done when Mama the night owl turns in. We run two bottles of her specialized formula.
She does eat during the day. What she gets at night is just under 500 calories, so she eats during the day approximately 700 more.
She has been with us for 21 months now and she still eats very much the same as when we picked her up. She is a little unusual in this area. We have watched many kids come home before and after her that didn’t eat, and for the large part they all learned in a few months or less. She is working on her own schedule and that’s okay. Part of being a Mom is waking up every day and seeing your own victories, and we have had to learn that. The hardest part has been having to answer the same questions day in, and day out, with people that we see. And you know what? Its not anybody else’s business. If anybody spent a day or two with us, they would know that it isn’t for lack of trying, it isn’t for lack of helpful tips, it isn’t because we haven’t found the “right” solid yet. She’s not interested. She’s stubborn. At the end of the day, it doesn’t matter. She hasn’t been one of those kids that “woke up one day” when they had been home for exactly one year and “decided she would eat.” Jason always says she might just be an adult who wants to drink smoothies all the time. I used to shudder at the thought of her NEVER eating, but is it actually that big of a deal? No. Not really. In the words of Marie Antoinette, “Let her eat pudding”…or something like that.
What is new for us? Having the rate up and the tube done by about midnight is awesome. We have finally got to a good place where it is done early enough that she still has an appetite in the daytime and doesn’t wake up hungry in the middle of the night.
She will now eat off of objects that are not her favourite kind of spoon! She will eat off a fork, a bigger spoon, and even…a breadstick!!
Seriously. Eating the breadsticks and cheese snack is just about the best thing that has ever happened to us. Think about being out with your hangry toddler. You probably just toss them some crackers. This is the first food that doesn’t require refrigeration and/or a spoon. Also new is that if we do bring a spoonable snack, there’s a chance she can feed it to herself while she sits somewhere. She used to refuse to feed herself because of the mess. There is a chance that she will make a big mess. She no longer SCREAMS when she gets food on herself! Yes, sometimes there’s a whine, but she will actually LICK HER FINGERS now! Going out used to require finding somewhere to sit so that we could spoon feed her whatever snack hadn’t gotten too warm in the diaper bag. Oh the yogurt we have wasted in that purse! Last week we trudged through the mall WHILE she ate her breadsticks and cheese. Okay, so its just the cheese off the bread but who cares!
We’ve also ventured into savory land. She will eat soups now, which has really expanded our lunch horizons! She still hates most of it on any given day, but since I know she HAS eaten it, she can’t get away with refusing. :p
Apparently she loves Cheetos. I don’t know what else to say. Maybe that was the “right” food all along. She even tried actually eating one…in nibbles. It would have taken an hour, but (my new anthem) WHO CARES!!
Another “big one” for us has been learning to hold the food in her mouth. She still struggles with the oral motor skills to actually move the food onto her teeth and to chew it. Before, eating and swallowing were the same thing. The food entered her mouth and was instantly swallowed in one reflex. You can imagine that was terrifying for her, to have someone try to stick something in her mouth and she would instantly swallow/choke on whatever it was. So yeah people, I would have yelled at you too. Sorry not sorry, offerers of food at family gatherings, I know who you are. (And you aren’t proving to anyone that she’s a brat by doing that, nor do I think its funny.) In order to learn this skill, we have had to work hard and work backwards. It took a long time of showing her how to either take something out of her mouth, or spit it out if it was too big. Life skill mastered.
I wish I had more actual tips, there are some printouts from her therapy that I wanted to share, but I wasn’t able to find them all right this second. So once I’ve tracked those down I will post them! The only thing that has been helping us is consistently going to therapy where she tries new things, and always offering new foods. At meal times we plate her up exactly what we are having. I used to try and get it into some kind of form that she could actually eat, but we’ve made better progress by serving each of us the same, and then getting her to scrape some, or lick some, etc.
If you have a kid with feeding troubles, solidarity! I see you Boo.