Sep 15, 2012

Major Feeding Progress

I've been telling you I would write a post about feeding and here it is. I warn you it's long. Feeding issues are complex for a tube fed child but there is a video at the end of this post so read on and don't miss it at the end.

In June we started seeing a new speech therapist to work on oral motor skills as they relate to feeding and speech. We were referred to this therapist by Seattle Children's. I had been requesting to get Ainsley into an intensive feeding program meant to wean children off feeding tubes. Why?

Despite being virtually 100% tube fed Ainsley has been increasingly interested in table foods. A contradiction it would seem. She has always sat at the table with us at dinner time and explored table foods as far back as I can remember. She loves to taste, she just wouldn't swallow any of it. Recently though she has been putting the food further back in her mouth and even biting pieces off and chewing it some before spitting it out.

I've tried everything at home and I knew I needed help but after talking with them I decided it would be better to work with her at home with some guidance from a therapist rather than spend intensive periods of time at the hospital with all 3 kids.

Ainsley's been able to safely swallow purees (in limited quantities) for years. The hurdle was getting her to eat anything with any texture. She wouldn't even eat buttery mashed potatoes or applesauce without gagging. I knew that she could do it though because small chunks of fruit could be hidden in yogurt and she would swallow it fine until they were big enough that she noticed them. In addition small quantities of baby cereal could be added to smooth purees. There was an invisible line, though, and any time the texture surpassed "the line" she would gag rather severely and spit it out.

In the past I tried pureeing every possible combination of foods and flavors to make a puree that she really liked well enough to eat a meal sized quantities but nothing ever stuck, and she usually preferred her blenderized food.  In fact in summer of 2011 she was drinking her blenderized formula, about 32oz a day of it or 3/4 of her feedings. But it was short lived and when she got a virus (not from aspiration) she stopped eating orally overnight. I was suspicious that this "backsliding" was due to tonsillitis. Since then she has not been interested in drinking more than a few ounces of blenderized formula, whether I made it thick or thin. I tried again this summer with little success.  I have tried having her drink Pediasure and the result was no better.

Since her tonsillectomy in July I've seen an even greater increase in interest in foods and I've been hoping it was due to less inflammation down there by her epiglottis and perhaps an increased sense of taste (she is capping easily even with the 4.0 trach so I think she is getting better airflow now).  It is not uncommon for kids with trachs to have difficulty eating. In addion though Ainsley has a cerebellum malformation and eating is challenging for her in the same way that all other motor skills are. In addition her swallowing muscles are weaker because she doesn't have to eat orally.

After giving it a lot of consideration I decided the problem was that she really wanted the variety of taste and texture of table food but just didn't have the skills to eat them.

And so back to therapy.

We've been working on jaw strengthening. 

And working our way through the straw hierarchy and doing Beckman Oral Motor exercises.

In addition Dawn introduced this new therapy that I'd never heard of called ILS (Integrated Listening Systems-for a video with further explanation click here.).

For part of our therapy sessions she wears the ILS headphones while she works on oral skills or plays. The headphone has some sort of bone conduction piece in the connecting piece of the headphone that sits on the skull. The music is nice classical music that is designed for the program but basically just sounds like ordinary music to me.

Here she is really working over a pizza crust, one of her favorite "foods". These pictures were taken later after I'd been conducting my own intensive home feeding program this summer.

We worked on oral feeding for every meal plus snacks. I spent hours and hours spoon feeding.

I'd try to have her spoon it herself. Watching in the mirror helps with oral awareness. But ultimately she would tire. My goal was for her improve endurance and eat entire meals. I learned that hunger helped immensely but she just requires too many calories to eat all her food orally especially if it is pureed (not varied or interesting). I even made an AAC page so we could "talk" about the food. I thought perhaps she could tell me what she didn't like about the food. We worked on describing tastes: salty, sweet, spicy, & tangy. She did learn quickly to tell me to "warm it up". Until I learned that was a stalling tactic.

You name it, I've pureed it.

Conventional food likes veggies, chicken and potatoes with butter.

To pureed pepperoni pizza.

After trying it all, I knew the missing motivating factor was hunger and the bigger problem was her knowledge that when she would get tired I would just tube feed her.

Sure enough during these intensive feeding sessions she would cry and ask me to tube feed her. 

It was miserable. For all of us. And a shitty way to spend the last weeks of summer.

It wasn't easy for her.  I'd hoped she would get faster in time (and perhaps she would if we had that luxury) but instead I had to do the spooning in order to get the feedings done in a reasonable amount of time.

Still we made progress.  

As she got stronger and was motivated somewhat by hunger I got her to tolerate increasing textures. Like baby cereal with pureed berries, mashed bananas(a previously rejected texture) and cream.
For the first time in her life she ate a few ounces of buttery mashed potatoes. 

Even though we took apple squeezers to school when she was 2, she actually started to like them. (The new flavors also helped.) 

One day she even asked for a banana that she saw on the counter top. She bit it into a thousand pieces and even though she didn't swallow it, it was progress and I could tell she enjoyed it.  

She ate a tiny bit of refried beans. Another "texture" she previously would NOT tolerate. I think she may have swallowed some bits of tortilla chips.

She became excited for snacks, even if she couldn't fully eat them.

She started to tell me that she was hungry for the first time in her life. We had established the connection.

And although she always liked to work over a sausage or hot dog there was a difference in the amount of chewing I saw.

When I took the big kids to McDonald's for shakes I believe she swallowed a bit of french fry. And I think she started to swallow small bits of pizza crust and chips.

Unfortunately after 2 1/2 weeks of eating all her meals, 3 plus a snack or two, orally, she woke up with stomach pain. I think she had become constipated (Yes she was getting water through the tube.) probably from too many bananas, potatoes and maybe the pizza. I knew she wasn't feeling well and I wouldn't be able to get her to eat lunch and dinner that day. Even though she ate full feedings she was looking thinner and I knew she couldn't afford to skip any meals, even for a day. So I tube fed her.

I knew that once I "gave in" we were done. Tube feeding is easier for her. Eating is hard work for her. So if she knows tube feeding is an option she'll choose that.

And you wonder why I don't like tube feeding?

I was hoping we could make a full switch to oral before she started full days at school (and then progress with textures) and we were SO close. But ultimately I don't think she's quite ready. It was very disappointing. I could almost imagine a day that I could fix a single meal for my entire family or leave the house without having to bring feeding equipment. Or to someday eat at a restaurant without having to explain that one of my children can't eat or worry what other people might think about feeding her through a hole in her stomach.

I felt sick, for all the time spent that could have been spent doing something else.  This time and the countless hundreds of hours spent working on feeding over the past 5 years. It is hard to decide where to put your energy. Especially when you have other children.

Still think it was worth it. She strengthened her swallowing muscles some. And I think she worked through some of the texture aversion. And that paved the way for this glorious day.....

On Friday 9/7/12 she ate some goldfish crackers at school. Then later that night she ate more, probably another 15.*

See, all gone. Mostly.

We taught her the sign for fish crackers and she is eating some every day.

And at therapy she has allowed us to crush crackers into her applesauce. Another previously un-tolerated texture. It would appear we have crossed the bridge.  We will be keeping a close eye on her secretions to make sure she isn't aspirating. Despite previous questionable swallow studies, chest CT's over the past couple years appear to show her lungs have not deteriorated.  It may be a long road yet, but I have hope that Ainsley will one day be an oral eater.

*I would  like to thank my dear friend Lisa for recognizing what a big deal this is making the sweetest video to congratulate Ainsley. She LOVED it! To see it click here.


  1. Congratulations! Everything you did this summer is progress. She will eventually get it--no doubt in my mind:)

  2. I have been following Aisley's accomplishments for almost two years now, like many others we found your blog when looking for infor on a blended diet. My daughter has had a tubie all her life, is NPO and we have been doing BD since then. I think Ainsley is absolutely fantastic, she really can do anything she sets her mind to. The video is amazing and lease tell her she is awesome!

  3. I appreciate how other people sacrifice themselves to feed child with disability. It takes a lot of effort and patience doing this at the same time fulfilling on their part that they were able to help feed a special child. A great success to both of you.

    Joseph @ volunteer in ghana

  4. Wow! I can see a TON of progress in Ainsley and I have been following your blog posts for about a year and a half. Still, like you said, there's still a long road ahead. I think that with time comes more progress, don't you think? And I can relate. Tube feelings can turn VERY messy real quick. I don't like them either. Hopefully one day you will never have to tube feed again. There's always hope. I loved the videos by the way! Best of luck to you and Ainsley! From, Abby

  5. This is SO INSPIRING! I am so touched by your stories, and wow, you are doing your mommy job very well. Feeding therapy progress is sooooo slow. I am so happy to see her enjoying food!

  6. Okay, so I've read this post and watched the video several times now... I am just blown away. What a BIG deal!!! Seriously. I just can't say it enough... CONGRATULATIONS!!! I am so proud of her and of you! I KNOW how much work feeding is - and how incredibly time consuming and emotionally draining it is. You've done a fabulous job. And Ainsley's natural interest in foods is remarkable. I've always thought that. Harlie has never shown an interest like that. Ainsley's desire combined with your determination is producing amazing progress. By the way, LOVE the photo of her with her head down on the table. :-) I honestly can't wait to see what she eats next.

    Much love to the both of you!!!
    Christy xoxo