hypotonia

  • Favorite feeding therapy finds

    Yes, I know this post’s title is somewhat of a tongue twister. That’s intentional, because a huge part of feeding therapy is working that tongue!

    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.)

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  • Standing tall

    Last week I shared a photo in my personal Instagram account of making crafts with JB to distract him during his time in his stander. I received several questions afterward, and realized I never mentioned his stander before on the blog, so I’d like to do that in today’s post.

    As I’ve mentioned before, one effect of JB’s genetic syndrome is hypotonia, or low muscle tone. (Not-so-fun fact: Another phrase for hypotonia is “floppy baby syndrome”, joining my previous least-favorite medical terms of “geriatric pregnancy” and “failure to thrive”.) JB’s muscles don’t provide the resistance a “normal” child’s would. Here’s an awesome demonstration highlighting the differences among typical muscle tone, low tone and high tone.

    JB’s hypotonia has made it difficult for him to learn to sit, crawl, stand or walk. While we are working on these skills piece by piece, it’s also important that he start experiencing some of the benefits of standing throughout the day – specifically so his legs can start bearing weight. This is where the stander comes into play.

    We first applied for JB’s stander back in August when we also applied for his adaptive stroller/wheelchair. His team of therapists and doctors wrote their letters of support for insurance, and we worked with a medical supply company to find the best option for JB’s situation.

    The good news is that by starting him in a stander at such a young age, he’ll get lots of use out of the equipment. It should last him a few years, even if he has several growth spurts!

    The goal is to increase gradually the amount of time he’s in the stander. He started at 15 minutes a day, and now can go up to almost an hour a day, if he’s well rested. It’s hard work, as his body is using parts it never has until now. It helps if we keep him distracted. Luckily, the stander has a tray, so he can play with cars or blocks while in there. His favorite activities are throwing things off the tray and complaining because he wants us to pick them up. He also enjoys watching Sesame Street while in the stander – either on TV or his iPad, although he often just throws the iPad, too.

    In true JB fashion, he quickly (we are talking five minutes in) learned how to wiggle his feet out of the stander, so his sneakers stay strapped in and he can kick and dance. Yes, this defeats the purpose. Yes, he still occasionally tries this maneuver. Luckily, the stander has brakes on it (similar to those on a stroller) to keep it in place when he does this.

    We have already noticed big improvements since getting the stander. His head control, trunk control, legs, and digestive system (which is lined with muscles) are all getting stronger.

    I have found I’m also getting a bit braver since we got the stander. Parents and therapists are responsible for everyday adjustments to the equipment; there’s a giant instruction manual PDF and a tool (that looks like a mix of that IKEA tool and a Swiss army knife on steroids) to make minor adjustments as he grows. I even lengthened the stander the other day, as his legs seem to get longer by the minute, I swear!

    Well, those are the basics of JB’s stander. If you want to help families who can’t afford equipment for their children, here are some organizations doing a lot of good work:

  • The light switch

    JB’s second birthday party is this weekend, and I’m in the process of getting last-minute details ready. Today alone I’ve learned that there are approximately 4 million varieties of balloon weights, and 590 types of ready-made “white” frosting (because, let’s be honest, I’m not making that from scratch).

    Another thing on my mind, though, is the freaking light switch behind the high chair in our kitchen/living/dining area. Also known as the bane of my existence in photos over the past two years.

    What’s wrong with the switch? Well, it sticks out like a sore thumb – a cheap, dingy white thing on a chocolate brown wall. And it shows up in every single photo of JB in his high chair. (Because of JB’s low muscle tone – also known as hypotonia – he can only sit up with the assistance of harnesses and straps like those on the high chair, car seat, or his special therapy chair and desk.)

    It would be easy to Photoshop the light switch away, or to shift the highchair six inches to the left or right. But no. This time, I am not going to play that game.

    No one is focusing on the light switch. They aren’t thinking, “God, that’s ugly – why didn’t they paint it?” or “Well, that’s what they get for renting and not owning their home. What failures!”

    What are they thinking? I have no idea. Maybe “Look how happy he is!” or “He’s getting better at his head control.” Whatever it is, if they are focused on the light switch, they are missing out on a beautiful little boy with eyes filled with joy, trust and curiosity.

    I want people to appreciate the strength and resilience I see in my child. As my husband perfectly stated: “JB doesn’t feel sorry for himself, and he doesn’t want you to feel sorry for him either!” I want to show him at his best: When he’s trying a new activity like coloring or playing with bubbles; when he stops projectile vomiting for one whole hour and I can bring him to the library or on a walk through the neighborhood.

    I don’t know what JB’s future holds; I can’t control that. I can control what is in the Instagram frame, though – and today I’m deciding to let that silly light switch stay in the picture.

    Photo by Steve Johnson on Unsplash

     

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