{this blog is written by G’s mom} When you have a typically developing child there are endless resources to explore about what are the best products to buy. There are reviews online about the best baby toys, strollers, and high chairs. You can ask your friends and family for ideas. But when you have a child who is not typically developing, the information and resources are limited and your needs are much more specific. So for new Cdkl5 families, here are a few of my favorite things that have helped me with G. (Just FYI: I do not get paid to endorse any products or have any connection to the links except to share where I have bought things.)
For Oral Eating
Magic Bullet - I bought my first Magic Bullet in college and didn’t use it once! But when G became an oral eater who never progressed past purees it became a life saver. I’ve blended fruits, veggies, meats, eggs, grains, anything you can think into a nice puree consistency for oral eating. The container is small so it’s perfect for single meal blending. Tip: avocado makes purees nice and smooth every time! https://www.amazon.com/Magic-Bullet-Blender-Small-Silver/dp/B012T634SM/ref=sr_1_3?crid=2DKDU4T5FS8K1&keywords=magic+bullet&qid=1558380721&s=gateway&sprefix=magic+bull%2Caps%2C178&sr=8-3
Simply Thick Pump - When we first started thickening liquids we were given Thik n Clear. Trying to get the powder to dissolve was a pain. When we (unsuccessfully) tried the keto diet for G’s seizures we had to switch to a thickener that had less carbs. I love Simply Thick! It comes in a very convenient pump and is a gel which mixes much easier. They also have small packets of gel for traveling. https://www.simplythick.com/Bottles-Pumps
Milk Frother - A milk frother was the best way I could make sure that the thickener quickly and completely mixed into fluids. It is a breeze to use and clean. I kept one in my diaper bag for thickening on the go! https://www.amazon.com/1Easylife-H422-Stainless-Handheld-Electric/dp/B00SKFCSB6/ref=sr_1_7?crid=1AWDGAZUQ1PEL&keywords=milk+frother&qid=1558381039&refinements=p_n_feature_keywords_browse-bin%3A4703082011&rnid=2840047011&s=kitchen&sprefix=milk+fro%2Caps%2C156&sr=1-7
For Tube Feeding
O-Ring Syringes - Before G got his gtube I spent a lot of time researching and learning about home blending for gtube eaters (highly recommend “Blenderized RN” private Facebook group). Many, many moms were recommending o-ring syringes. They work better and last longer than the syringes the DME gives you with your gtube supplies. Now that he is bolus fed and not on the pump, we use these syringes every meal. I purchased 6 of the 60ml and 3 of the 100ml. *these are not Enfit compatible. https://www.squirrelstore.com/product/80013
Squeasy Gear - Another product I learned about on Facebook is Squeasy Gear. It is a complete game changer for bolus feeding! I can fill my Squeasy Gear bottle, grab a syringe, and feed an entire meal with no mess. Amazing! I get the 16oz. Easy to clean, all the food comes out with no waste. http://squeasygear.com/16oz-aqua-squeasy-sport/
Blentec Total Blender - If you are going to blend for your gtube eater you really should get a high quality blender. They are expensive, but worth it considering you’ll use it for literally every meal you make! I got a Blentec Total Blender at Costco (on sale!) and it came with both a WildSide large jar and the Twister smaller jar. I use the large jar for batch blends and the small one for single meals. It liquifies homemade chicken soup with veggies in one minute!
Strainer - Just to be doubly cautious, I always strain my blends before pushing them through the gtube. Doing so is quick and easy, and gives me confidence that there are no grits or lumps that could cause me trouble.
Insulated Adapted Feeding Bag - I have ordered multiple times from the Etsy shop Mighty Moose Alters and the maker is fabulous to work with! She will even look at a bag I find on Amazon and order/adapt it for me! https://www.etsy.com/shop/MightyMooseAlters
Homemade Blended Formula Handbook - This is a fabulous book for anyone who cooks for their child (or themselves). It is targeting gtube eaters, but the charts and meal plans make it valuable for anyone who wants to ensure their child is getting what they need nutritionally. https://www.amazon.com/Homemade-Blended-Formula-Handbook-Marsha/dp/0692651241/ref=sr_1_fkmrnull_1?crid=1AU6F4BPB30M7&keywords=homemade+blended+formula+handbook&qid=1558381894&s=gateway&sprefix=homemade+blended%2Caps%2C130&sr=8-1-fkmrnull
Complete Tubefeeding - I also recommend this book. Written by a man with a gtube, it is packed with sound advice, jokes, recipes, and information on all the details about tube feeding you didn’t realize you wanted to know. https://www.amazon.com/Complete-Tubefeeding-Everything-tubefeeding-nutrition/dp/1470190222/ref=sr_1_fkmrnull_2?crid=1AU6F4BPB30M7&keywords=homemade+blended+formula+handbook&qid=1558381952&s=gateway&sprefix=homemade+blended%2Caps%2C130&sr=8-2-fkmrnull
Other Products
Parent’s Choice Diapers Size 7 - Generally most brands of diapers run up to size 6 and then transition to potty training products. People say Pampers makes a size 7, but I have never found it. Parent’s Choice (from Walmart) makes a size 7. They are great quality and inexpensive. Walmart will deliver for free if you buy two boxes! https://www.walmart.com/ip/Parent-s-Choice-Diapers-Size-7-78-Diapers/167170034
Fisher-Price Infant to Toddler Rocker - When your child can’t sit independently you are always looking for safe places to put them down. I own two of these! One is near the front door so we can both put shoes on and one is in the kitchen. It is lightweight and will last a long time. I use Elephant Ears (see below) with mine for extra head support as needed. https://www.amazon.com/Fisher-Price-FDP04-Infant-to-Toddler-Rocker/dp/B01M3QYIE3/ref=sr_1_3?crid=25CSUT0QWTAWB&keywords=toddler%2Brocker%2Bchair&qid=1558382360&s=gateway&sprefix=toddler%2Brocker%2Caps%2C152&sr=8-3&th=1
Elephant Ears - This is another product of which I own multiple! When your child doesn’t have head control, you are constantly on the lookout for things that help keep their head in midline. Elephant Ears are wonderful! They are useful in an endless amount of situations and small enough to throw in the diaper bag. Cute patterns too! https://www.amazon.com/Original-Baby-Elephant-Ears-Stroller/dp/B079C7S16R/ref=sxts_sxwds-bia?keywords=elephant%2Bears&pd_rd_i=B079C7S16R&pd_rd_r=ced4abaa-16e9-4e90-8ee9-0bbd135fa827&pd_rd_w=TExVU&pd_rd_wg=B3IQ5&pf_rd_p=f0479f98-a32d-45cd-9c12-7aaced42b1ec&pf_rd_r=S7VKJQD770PTM3K1PGXW&qid=1558382667&s=gateway&th=1
Thick Gym Mat - For all those home PT sessions and for a soft and safe place to lay down a thick mat is really helpful. This one folds up to store away and is nice and thick so you don’t feel uncomfortable spending time on the floor. I got black to help with G’s Cortical Visual Impairment. We do a lot of black backgrounds around here! https://www.amazon.com/BalanceFrom-All-Purpose-Anti-Tear-Gymnastics-Exercise/dp/B072BN45BW/ref=sr_1_5?crid=PA8F5SYZV6TO&keywords=folding%2Bgym%2Bmat&qid=1694111159&sprefix=folding%2Bgym%2Bmat%2Caps%2C168&sr=8-5&th=1
Activity Set - This set of soft shapes is great for practicing those PT skills at home! https://www.amazon.com/gp/product/B01GAAGCWS/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1
Peanut Ball - Again great for PT! https://www.amazon.com/Milliard-Anti-Burst-Approximately-Exercise-Birthing/dp/B00U0FSX18/ref=sr_1_3?keywords=peanut+ball&qid=1558383072&s=gateway&sr=8-3
Hip Helpers - Low-tone kids often frog out their legs, but it isn’t a great position to always be in. Hip Helpers keep legs in a more natural position without being restrictive. They can custom make a size if your child has outgrown their standard sizes! https://www.hiphelpers.com/
Lj-V Life Jacket Collar - G never was able to use the Otteroo effectively (he would arch back and it was a hazard). Same with the Keifer Collar. I found this amazing Lj-V Collar that works for larger kids and he can be totally independent in the water now! He got a spa for his Make-a-Wish and we cannot wait to get into it once the weather warms a bit! https://www.pfd-a.com/PayPal_LifeJacket_USD.php
Leachco Pillay Plush Sling-Style Lounger - This toddler lounger is AMAZING. We use it every day both on the floor and on the sofa. It is comfortable and has a removable cover for washing. https://leachco.com/products/pillay-plush
On Etsy - I love Etsy. If you can’t find what you’re looking for, chances are that someone will know how to make it. So many talented people!
Wearable Blanket by mybabyboutique - G has outgrown the wearable blankets on the market so I had one special made for him. We actually have two. One is fleece for winter and one is cotton for spring. Beautiful quality and very reasonably priced! Customize the pattern and size! https://www.etsy.com/listing/268242896/new-fleece-hot-pink-paisley-blanket
Safety Decal by directvinyl - I have this on my wheelchair van to alert responders in case of emergency. They have lots of awesome decals! This one can be customized to say whatever you’d like! https://www.etsy.com/listing/227819437/you-choose-text-special-needs-medical?ref=shop_home_active_1&frs=1
Wheelchair Poncho by MBCozyCapes - I ordered a custom, waterproof poncho when we got our wheelchair van. Sometimes getting a coat on can be tricky and I wanted something that would be warm and practical. Many fabrics to choose from! And all the way to adult sizes! https://www.etsy.com/listing/664347634/wheelchair-poncho-small?ref=shop_home_active_10
Do you have a product you love? Please share in the comments!