The Quail’s been a busy bird in terms of her eating in the last few months. This has probably been the most challenging area for us. Mostly it’s the learning curve of repeatedly finding out that you don’t know exactly what all is going on inside that little digestive tract and it’s openings. We’ve been doing oral-motor therapy since the Quail was about 5.5 months old under the supervision of our super OT Kathy. Last spring we had the opportunity to take part in one of Sara Rosenfeld Johnson’s traveling clinic and get a formal evaluation. This happened after our first swallow study and Upper GI and before the infamous duodenal stenosis repair. Since that time the Quail’s been on a bit of a diet yo-yo. Right after surgery she gained 2 lbs within a month. This isn’t too surprising considering that even with all the roadblocks she had to good nutrition she managed to plant her weight firmly at the 50% growth curve on the standard charts. As her food world has opened up, she has dived in with vigor. Since that time she has been working her way through Sara’s straw hierarchy and working on the bite tube set. She’s advanced to being able to chew a lot more soft, meltable type foods in a munching style. The straws have helped tremendously with tongue retraction and she does keep her tongue in its little warming hut most of the time. Both Kathy and Sara have been great about offering up and trying a variety of suggestions of oral-motor exercises and when one doesn’t work, getting rid of it and moving on to something else. Sara has been clear that the more enjoyable the activity is for the Quail the more successful we will be with the oral-placement therapy and the safer and happier eating will be with the added bonus of clearer speech as she grows.
Have I mentioned before how much of a…ahem…temper…the Quail can have when she doesn’t like or want to do something? There’s no bossing this girl around. We tried our best to be prepared for the program plan update. Sara comes through town 2 times a year and you can get a plan update, record the session and bring your entourage of therapists and family members along to learn the protocol and understand the therapy better. The Quail packs a roomful and we’re grateful for all the extra time out of everyone’s busy days that they have been able to muster to join us.
In preparation we repeated the swallow study last week in hopes of good news that maybe we could cease thickening her liquids. The straw hierarchy is supposed to be practiced with think liquids, but since it hasn’t been safe for the Quail we’ve thickened it to a nectar consistency since our swallow study last April. I guess what I found out is that I didn’t know exactly how aspiration and dysphagia worked. I thought as she got older and stronger she would have more control. The SLP who did the swallow study said that typically what happens is that when a growth spurt happens and her “equipment” grows; she has to work her muscles harder to achieve the same result. So her risk for aspiration may actually vary as she ages. She said that until she is 8-10 years old mentally we wouldn’t be able to intentionally work on swallowing exercises. So for now the best way to develop her skill is practice with safe foods. During this swallow study she showed micro and actual aspiration with liquids up to a honey consistency. This was disappointing because last April she was cleared for a nectar or thinner consistency with the liquids. It was noted though that with the honey consistency and an upright position and proper chin-tuck she showed no difficulty or aspiration when she drank through the therapeutic straw. So that was good news. The other issue was that while she munched meltables like Puffs, she was swallowing other solid foods whole. So the recommendations were to continue with the straw drinking and to work on chewing.
I’ll back up and say that at this point we have randomly tried various foods. There are some- like taffy, steak, deli meats that we instinctually knew not to try but others like cubed bits of apple or small bites of a chip and fruits that we have tried. Sometimes she’s gagged and thrown up and other times it’s just slipped on down. Sara pointed out with things like wet, slippery noodles and pieces of fruit that the Quail would briefly suck on the piece before swallowing it whole. She still has difficulty with tongue lateralization and would flip the piece of food over in her mouth with her tongue rather than moving it back and forth. So we have an approved list of foods. I had typed up all of the ones she eats routinely before we went in. And we now are clear to not vary her diet for the immediate future from these items so we don’t endanger her.
Her biting has greatly improved, but is still pretty weak on her right side. So the best exercise for that- is chewing! Which the Quail is happy to assist with. We now will offer bite-size pieces of about a 1/4-inch to either molar, with double the offerings to the right or weaker side to give it a bit more of a work out.
We’re holding off on teaching her to spoon feed and restricting her independent feeding now too. Not because she isn’t capable of learning this. She really likes to feed herself and is happy to have you show her how to use a spoon hand over hand. But remember that temper I mentioned before? Well when she doesn’t like something she is a pistol. We want to preserve her willingness to let us in her mouth as long as possible. Sara felt confident that at some point in the near future, the Quail would most likely insist on feeding herself and at that point how frequently she lets us in her mouth for exercise and safety precautions would greatly diminish.
I felt a little sad at this change, not that I think the Quail will mind at all. She’s all for a personal feeder. But it did feel like going backwards in her progress. That being said, mealtimes have been extremely nerve-wracking for the last few months as we have watched her squirrel away food in her little cheeks and watched the morsels make a home just under the roof of her mouth as she struggles between trying to clear the food from her mouth and wanting to simultaneously stuff the food in her mouth as fast as she can get to it. So ultimately I think the slowing down is a wise and safe choice. She’ll get to independent feeding soon enough. It’s important she learn how to eat safely and build up her strength.
The other issue that felt like a step back was that for the next month we are going to thin out her purees and she will drink the main portion of her meal after she’s had chompers training with the table food. When we used the spoon to feed her she would push her tongue out in eagerness to get to the food and it would become a struggle to get her to use her lip to take the food off the spoon. In essence the spoon was encouraging tongue protrusion and undermining the work we had been doing with the straw and syringes on tongue retraction. So it’s smoothies and protein shakes for a while for this girl!
She did good with her Ellie Jiggler while we were there- which was surprising. She consistently bites the ear of poor Ellie at home. But with Sara’s practiced hand we were able to elicit one time. Sara felt that if she can do it then we work on it. But at the point in which we struggle with her to not bite it then we move on to another activity. She now will use the red and yellow chewy tubes for biting practice as well.
The other major change was that oral-motor exercises are now to be done at times other than mealtimes. In the last month or so the girl has been more than a little uncooperative as she salivates at the prospect of her meal coming and shoots withering looks and pteradactyl-like screams at our heads as we try to convince her that Ellie Jiggler is just as fun as a cheeseburger. Hopefully removing the exercises from mealtime will help make them and the mealtimes more pleasant all the way around.
Wow! Thanks for sharing! We are VERY familiar with swallow studies and fear of aspiration… What a process for all of you–I’m sending energy & patience your way!