In today’s post, I’m focusing on JB’s feeding therapy: How he learns to eat, what gear he uses and the incredible progress he’s made. (Please note: this is about our unique experience – every child’s case is different, and one approach isn’t necessarily better or worse than another. Also, I am not even remotely a medical professional, despite watching Grey’s Anatomy until McDreamy died.)
It turns out that people with JB’s genetic syndrome have an 80 percent chance of experiencing feeding issues, usually requiring a feeding tube at some point to provide calories and nutrition. Doctors believe it’s related to the hypotonia – as everything from chewing to swallowing to digesting requires muscles.
While JB still receives almost all of his nutrition and hydration through his feeding tube, he’s working on increasing how much he can eat and drink by mouth. As he improves, the hope is that he’ll consume more orally and less by tube.
JB sees a feeding therapist weekly. She is a speech language pathologist (SLP) who specializes in swallowing disorders. In each session, JB, his therapist and I work on a variety of aspects of eating and drinking:
- Sensory experience: Feeling, smelling, tasting and playing with the food;
- Hand-eye coordination and fine motor skills: Bringing the spoon to his mouth, picking up little pieces of food, drinking out of a cup;
- Chewing and swallowing: Taking small enough bites/sips that he can chew and swallow without gagging or vomiting, strengthening his jaw muscles, moving food with his tongue, closing his lips around a spoon rather than scraping food off the spoon with his front teeth.
People often ask me how someone learns to eat. Well, it takes a lot of time, though JB is making great strides, especially as he continues to gain strength in his head, neck and torso. Since starting with his feeding therapist last summer, he’s gone from occasionally having a teaspoon or two of pureed baby food to eating almost an entire jar of baby food, a dozen yogurt melts, 2 ounces of water, or even an entire cookie! Here is a list of some of some products that have helped on this journey.
- ezpz cups and spoons: JB’s feeding therapist recommended the ezpz tiny cup when we started re-introducing him to sipping water. The cup is weighted and textured on the bottom, for increased stability. And the top is flexible, so we can direct the water into his mouth more easily. The ezpz tiny spoons are designed to help encourage lip closure (and they are adorable). The best part about ezpz’s products is that every item is tested and approved by special needs therapists – including feeding therapists – to ensure children of all abilities can benefit from the products. (Note: the green cup and red spoon in the photo are ezpz products.)
- Ark Therapeutic Z-vibe kit: The Z-vibe is a vibrating sensory tool similar to an electric toothbrush. It’s the width of a pencil with different attachments for working the tongue, teeth, jaw and lips. JB uses it mainly to self soothe himself when he’s in sensory overload – he chews on one of the textured tips and instantly calms. He also sometimes uses the spoon attachments in feeding therapy.
- Ark Therapeutic Grabbers: Yup, there’s a repeat brand on this list, because Ark Therapeutic is just that awesome! If you’ve ever wondered what the “P”-shaped teethers JB is chomping away on in photos, they are these guys. They are made in the USA and come in a range of textures, colors and firmnesses to help build chewing and biting strength while also providing oral sensory input. I just ordered several more of these last night, as they are perfect for keeping in diaper bags, the car, his stroller, etc. Sometimes we even use these in feeding therapy to dip into food.
- Colgate Kids Powered Toothbrush: One of the best tips we’ve ever received from JB’s OT (occupational therapist) was to get him an electric toothbrush. Because of his positive associations with the Z-vibe, he thinks brushing his teeth is fun, too. (It doesn’t hurt that we get ones with little characters and bright colors!) For many kids with developmental or sensory issues (and their parents), brushing teeth can be one of the worst experiences, so we are fortunate that for now, he doesn’t mind it.
- OXO TOT Transitions open cup trainer: This was the cup that helped JB learn to drink water! JB still doesn’t have the strength to sip from a straw or work against the resistance in many children’s cups (after all, the resistance is what makes those cups “spill-proof”), but a completely open cup can be a mess. This cup has a plastic disc on top to hold some of the water back, while allowing water to still flow freely through the sides without any resistance. We have three of these cups and absolutely adore them!
- Bumkins waterproof bibs: Feeding therapy is messy – very messy. Cute cotton or muslin bibs just don’t do it when it comes to the serious splash-zone conditions, but we’ve had only good luck with Bumkins waterproof bibs. The best part? I can satisfy my 80’s/90’s nostalgia with the characters and patterns! We have Superman, Nintendo and Lion King ones so far. (See the Simba one pictured above.)
Do you have any questions about feeding therapy? Feel free to ask away in the comments, or on the Joyful, Brave & Awesome Facebook page.
(As with all my posts, these opinions are all entirely my own, and I have not been compensated to review any of these products. That being said, there are affiliate links in the above post. If you purchase from an affiliate, I may be compensated.)