“Can you start a website where you curate all these awesome finds?” my son’s therapist asked me half-jokingly (I think) last year.
As I’ve mentioned before, I often cope with JB’s diagnosis by shopping. I’m always hoping there’s a certain toy or piece of equipment that can help him develop skills a bit more easily, or make this therapy sessions more fun for him.
I am thrilled to announce I am now an affiliate partner of Zulily.com – my favorite online retailer!
Without a doubt, Zulily has been my top source for therapy (whether speech, occupational, physical or feeding therapy) and sensory items for JB. It is also where I’ve found the best selection of toys and books featuring people with disabilities.
In addition, I do most of my holiday shopping – birthdays, Mother’s and Father’s Days, Christmas, Easter – on Zulily. Since the pandemic, I’ve also been doing most of my own clothing shopping on Zulily. (Their shoes and plus-size offerings are especially fantastic.)
See the photo above? Those are all Zulily purchases I was able to grab in a three-minute mad dash through my house. Even the area rug is from Zulily.
Over the next few days, I’m going to be sharing some of my favorite Zulily finds both here on the blog and on social media. I’ll also be sharing suggestions from Jessica N. Turner, one of my favorite bloggers out there and a big career inspiration to me.
Is there anything in particular you are looking to purchase right now that you could use help finding? Let me know!
Please note: I know I sound like I’m doing an infomercial for Zulily, but this is not a sponsored post. If you buy something through the affiliate links used in this post, I may be compensated, but other than that, I’m just an [over]eager fan who loves a good sale.
I can tell you what I thought when I first heard JB’s gastrointestinal (GI) doctor say he’d need a feeding tube:
I remembered one time when I was maybe 12 and I couldn’t eat because I was too anxious about something happening at school later that day. Someone told me, “You know what happens when people don’t eat? They get a tube up their nose and have to get their food that way. You don’t want that, do you?”
I pictured the images I had seen in the media of comatose people in hospitals, hooked up to tubes and beeping monitors. (The Terri Schiavo case was all over the headlines when I was in high school.)
I thought of the scene from Season 2 of Arrested Development when Buster Bluth says he’d be happy just being fed soup through a tube for the rest of his life. (My mind usually turns to at least one sitcom quote, even in crisis mode.)
I believe this is what actually came out of my mouth when JB’s doctor mentioned feeding tubes: “He’s going to be hooked up to a machine forever?! He won’t be able to go to school or have friends or be a kid!”
Thankfully, the GI doctor was a mother with young boys about JB’s age. She “got it” from a mom’s point of view, and for that I’ll be forever grateful. She had a nurse come in and together they explained how common feeding tubes actually are. “Tubies” – or people that use feeding tubes – live fulfilling lives going to school, playing sports, making friends, having careers, and raising families. It is just a different way of eating, not a life sentence.
The nurse and doctor then showed me a feeding tube button like the one JB would have. I’m going to attempt to explain it the best way I know how, but I urge you to learn more here to see for yourself. The G-tube button looks like a combination of a post earring and the air vent you use to blow up an inflatable beach ball. The button is surgically inserted into the stomach – basically like piercing an ear, but in his stomach, and a wider “post”. It stays in thanks to the “backing” – a plastic bubble you inflate with a few milliliters of water. If the button comes out, you simply reinsert it and reinflate the bubble. If the button comes out and isn’t reinserted within an hour or two, the “piercing” closes up.
There are several kinds of feeding tubes, and each is named according to where it enters the body and/or delivers food. JB originally had a G-tube. (G is for Gastric, as it goes directly to the stomach.) He has had an NG tube (Nasal Gastric, as it enters the nose and goes down to the stomach) before during hospital stays, as those are usually temporary, and don’t require surgery to place them. He now has a GJ tube (Gastro Jejunal, as it has a port into the stomach and a port into the “jejunum” part of the small intestine.) Here is an excellent explanation where you can see examples of these feeding tubes and other kinds. No matter what the tube button, you use an extension tube to insert the food into the body, whether by syringe, gravity or pump. Here are some of the most common feeding methods through the extension.
So what goes into these tubes? Well, it depends on each person’s nutritional needs and lifestyle. Breastmilk, traditional infant formula, specialized formula for all ages, or blended and pureed foods are all options for tube-fed diets. Often times medicine and water are also given through the feeding tube.
I encourage everyone to take some time this week – Feeding Tube Awareness Week – to learn a bit more about feeding tubes. There are so many awesome resources out there to de-stigmatize them.
Finally, if you learn nothing else from this article, please remember this: Never, ever base medical knowledge on Tony Hale characters. No offense, but Buster and Forky are not licensed medical professionals.
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.)
(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.)