So today I rushed Cole to his feeding therapy appt. I had to wait for him to wake up from his nap, I had to wait for my girl J to arrive to watch baby Drew and Paige before I could leave. I had to fight traffic and the crazy AZ drivers in the rain. I didn’t let Cole walk to his appt, instead I carried him from the parking garage because we were so late. Then I went to the wrong floor. Then we had to wait for the therapist to get us from the waiting area. By the time we got Cole in the highchair to eat it was 35 minutes into his 1 hr appt. Then the therapist spends a good 5-10 minutes going over the attendance policy with me. We missed the last three feeding appts. One time was the time Cole went to the ER for breathing issues, one time he had a huge lunch and a big nap and I knew he wouldn’t eat for therapy, the third time I was just too tired (last Monday) to safely drive the 45 minutes to therapy and 45 minutes back home after dealing with Paige’s sleeping issues. Well, after reviewing the attendance policy we can not miss any other appointments for the next 9 weeks otherwise we will be discharged from therapy. At today’s appt, Cole ate like a champ. He chewed and swallowed a big square of brownies, and about ten pieces of chicken. The therapist again watched Cole eat and said what a great job he did. This is our third appointment with this therapist, and I do like her as a person, but I’m not sure what benefit we’re getting for spending 3 hrs driving around and being watched eating. We were late to Kindermusik because we once again hit traffic on the way home and both Cole and Paige LOVE Kindermusik.
I do want Cole to eat and grow big and strong. But I want to quit taking him to therapy. I feel terrible because I don’t want to look back in a couple of years when he’s small and still not eating great and say “well, if only you had taken him to therapy”….but it just doesn’t seem worth it. We’ve had four or five feeding therapists now and each one says Cole eats great and they just seem to watch him eat. I’m thinking I can just feed him at home, pretend I’m a therapist and say “great job Cole” with the same end result. Is that wrong?? And what are the odds that we’d make it to the next 9 weeks of appointments? With all the other appts and crap going on right now?
Posted in: babies
How Horrible! Not only are you trying to do all that you can for your son (and the rest of the family), but then you’re made to feel like an idiot by this therapist when reviewing the attendance policy! And on top of it all, it sounds like you aren’t getting anything out of the appointments. We had a program that came to the home that was supposed to be supportive of 1st time moms… after telling the 1st person I didn’t want her to come back, and then going through a similar situation w/ a 2nd, I can understand that you WANT to do anything to help your children - if and only if you know that it is actually helping. It’s a hard decision, and I hope that Eric can help you in determining what makes the most sense for your family. In the meantime; kudos to you for all that you are doing for Cole and Paige and Drew. (We still haven’t made it to a kindermusik class.)
I’d quit it and make sure you and your ped are keeping a close eye on him (obviously). It’s too must strain on you and the kids plus it’s not safe to be driving when you’re a zombie. On the other hand, how hard would it be to get back into therapy once you quit?
Shannon :):):)
Personally, I’d quit the therapy…it seems to cause more stress than good. And some kids are ‘just’ small. I mean if you look at his overall growth since birth he has done great!!! You and Eric are doing a great job!!! HUGS!!!
Kristin
I took my son Aiden to feeding therapy, and he tried each of whatever foods they gave him. Lots of different textures. As long as he was willing to do that, neither or I or the therapist felt that it was technically a feeding issue (like an oral aversion). He just does not like to eat a lot. He also aside from prematurity though had to deal with other issues not related to prematurity. He threw up nonstop for a year due to a double aortic arch (rare heart defect where you have two aortic arches instead of one, basically strangling the trachea and esophagus) that required major surgery at one year of age. I think since he was IUGR (he was born at 31 w 6 days, but measured at 28 w 4 days), it takes a lot longer for those preemies to catch up. He is currently almost 30 months and weighs 23 1/2 lbs, if we are lucky. He is currently not eating because he is sick, really constantly he is sick with respiratory illnesses (he has asthma, and tracheomalacia—see it is not just micropreemies with issues!) and is currently not eating. We are lucky if we get his bottle of pediasure in.
There are days when no solid food touches his lips, but other days when he will sit down and munch away on an apple.
It is frustrating! If you do not think the therapy is working then I would quit. Sounds like you have a kid like mine, just going to take longer to catch up, and not a fan of eating a lot! I often wonder since Aiden’s stomach measured nearly a month behind in growth (on the growth u/s right before emergency c)if maybe his stomach is still not smaller than it should be. He never really has been able to take in more than 4 oz at a time, well, now that he is older, occasionally 6 oz.
Well, just wanted to share.
Cindy & Aiden —a really tiny guy at almost 2 1/2 and only 23 1/2 lbs.
Personally, after reading your blog, I would quit. We have one that is small and we watched her intake FOREVER, she is just smaller and it is hard not to compare. As long as he eats food and tries it and you feel he is doing that, I think this therapy is WAY too stressful and time consuming. I mean what did people do years ago. We were taking ours to the clinic and after the last one, I said that is it, we didn’t learn anything we didn’t know, it was SO stressful, and they just threw numbers out, they are at this level, whatever. I knew in my heart they were fine and would be doing the things they should be on their own pace. I think Cole is a decent size and as the previsous poster said, as long as he is growing on his “own” curve, I wouldn’t worry.
It’s not really a weight gain issue with Cole and feeding therapy, it’s an eating issue. Kids his age shouldn’t be getting 96% of his calories from super jacked up formula that blows right through him. It’s the fact he doesn’t have the mouth muscles to eat table food that’s at the root of this type of therapy.
Have you guys try the chewy tube? is supposed to help developed the muscles around the mouth. My son doesn’t like it, so not sure if Cole will take on to it. Eric, could you share what’s in the “super jacked up formula?”. My son could use the calorie.
monica
Shelby gets most of her calories from her Pediasure because she has ’sensory’ issues when it comes to to eating…so we can certainly relate. Hopefully things will get better for everyone soon… HUGS!!!
Are you giving the kids vitamins? If it’s a size issue… what does your PED say about growth. All kids grow at a different rate.He’s not going to be malnourished and growth stunted because of that. What about gum? Can he chew gum/
I can’t offer much advice on the feeding therapy itself, but I can offer some personal perspective on the “therapy guilt”. Given the potential speech delays that preemies may have, well-meaning developmental specialists suggested that we have a speech evaluation.
By a speech therapist. For provision of her own services. I don’t mean to be too cynical, but what semi-intelligent speech therapist is NOT going to recommend that I take them to speech therapy to her, in her office?? So, at 18 months or so (can’t remember exact age) we started taking them in. First sign that it must not have been a serious concern: she let me talk her down to only 1 session a week without so much of a peep. I had serious doubts about whether she can really tell if there is a need, but god forbid I was depriving my children of an opportunity to make up for their very early arrival. God forbid that, on top of their very premature birth, I was potentially handicaping them with my skepticism toward speech therapy. It was once a week, but a major inconvenience, and we were still going to a million follow-up appointments with pulmonary, GI, etc…And in the end, I had to cut it off. and you know what? Maybe the kids spoke a bit later than their peers (marginally, I would guess, becuase what are 3-4 months in a lifetime!) but they are fully articulate, perfectly understandable, and have a vocabulary that blows me out of the water sometimes. I know it is a personal judgement call, but step one is to get rid of the guilt that you may feel about even considering stopping therapy.
Not sure if this helps…
Best wishes,
Ivanna
I go to feeding therapy at PCH with my 2 year old and it’s a joke. He has learned to kiss the cracker. I want to quit also but my sons GI told me to keep going so I could stay in the system. I hate the drive and the parking and the waiting. Our therapist is really nice, I wonder if it’s the same lady?
Hey anon–I know it’s crazy, huh? The parking garage is ridiculous!! Our therapist’s name starts with a M and she is pretty young. Very nice and Cole likes her…but yeah…what is the point? We are quitting therapy. I’m going to call her tomorrow. How did you get linked to our website if you don’t mind me asking? Was it because of GI issues or feeding issues or multiples?