Working with Raiden’s mom was an amazing experience. She was highly motivated which was crucial in taking on a blended diet for Raiden. A blenderized diet takes time and commitment and we were working together with 3000 mile and 2 time zones in between us. The fact that we both owned a Vitamix made it easier for me to create a blend for her and have her repeat it seamlessly step by step. My joy comes from seeing little ones with g-tubes grow and thrive on real food and helping other families experience the same success. So, without further ado, here’s Raiden’s story:
Brechae and Raiden’s Testimonial:
My son Raiden has been tube fed since he was 4 months old. He was fed breast milk fortified with formula for extra calories. As he got closer to a year old and my milk supply began to decrease I sought out his options for nutrition. I spoke to his G.I. and he wanted to put him on Pediatric Compleat. I’m the kind of person who does her research, especially with regard to my child, so I looked up the formula. Upon reading the ingredient list I quickly discovered that the product was mostly sugar. I didn’t want that for him. I remembered reading about a blended diet in a feeding tube group on Facebook. At the time I had no idea what it was but I wanted to learn more. I was directed to “Blenderized RN” group on Facebook and that is where I met Tina!
We bonded over both having tubie sons who also have Down syndrome. She helped/taught me to slowly start the transition from fortified breast milk to real food through his tube. Raiden doesn’t have dietary restrictions/sensitivities or G.I. issues. His aversion to food is mostly sensory so I was able to trial all kinds of baby food, baby cereal, eggs, whole milk, etc. with no problem. Once we learned what he tolerated, Tina created a breakfast blend just for Raiden (Raiden’s Breakfast Blend)! It had oatmeal, eggs, an apple and whole milk. It was my go to meal and gave me the confidence to create blends for him on my own with my Vitamix.
Initially he was fed via Infinity pump and could only handle small amounts at a time. I was worried it would always take hours and hours of him being connected to his feeding pump to get him to grow. Tina assured me that based on his medical history we would one day be able to bolus feed via syringe and that he would be able to handle more volume and she was right! When I started blending Raiden was 18lbs. Now he is 27 lbs! We are two years into our blenderized diet journey and I can honestly say that it has been one of the best decisions I’ve made for my son. Tina’s wisdom and guidance along the way has been such a blessing!
I met Tina in 2018 not long after my family and I had relocated from Washington to Southern California. My daughter Zoe has a rare syndrome and is g-tube fed. When we moved, Zoe was 100% formula fed and as we later found out, she was not tolerating it well. Tina was invaluable to me as I decided to change Zoe’s diet to blended real foods. She is always so encouraging and knowledgeable. So readily available to answer my texts or calls about calorie counts, g-tube tricks, blended recipes or really just about anything! She has met with me, taken me to the grocery store to show me what to purchase and how to prepare it, she is always willing to help. It was daunting for me to start this journey, because Zoe has so many medical issues and allergies, but Tina is always so encouraging and reassuring that I can do this! She truly has a heart to help other families and a passion to keep our fragile kiddos healthy and thriving. I’m so blessed to know her!Brooke Maxwell
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Just recently I had the privilege of attending the fundraiser kick off for Special Angels Foundation. I had been invited by our pediatrician who is the medical advisor. Since he had been taking care of our 6 children for over 20 years, I knew that this had to be something close to his heart to ask me to come along. He knew my heart. The heart of a mother with a child with special needs who’s mission was to help as many families get over the hurdles I had been dealing with for 16 years.
The fundraiser was amazing. There were so many stories of trials and triumph. So often those of us with special needs children feel alone, frustrated and exhausted. It was a relief to be in a room full of people who “get it”.
The focus of the foundation is to meet the needs that often go unmet. As insurance companies cover less and less, many who are in need of equipment and therapies go without. If you are interested in learning more about the foundation, joining us for events or supporting SAF, please visit the Special Angels Foundation website. No gift is too small. Every gift is a blessing.
This recipe is more of an addendum to my split pea milk recipe. I have had many more questions about it coming from Ripple drinkers. Some of the struggles were: separation, strong pea taste, watery taste and thickened texture. My original recipe was written for g-tube feedings and oral eaters with limited taste experiences. After fielding many of your questions, I set out to make a recipe that would work for Ripple drinkers. Please keep in mind, nothing we make at home can match the process that Ripple can produce in the lab. This recipe is creamier than my original recipe and does not separate. Hopefully my adjustments will make it more palatable. Please take note of the pictures above. The picture in the top right corner show 2 mason jars. The jar on the left is Ripple. The jar on the right is the DIY Ripple. Even after sitting overnight, it had not separated.
As always, my goal is not to just create and share new recipes but to educate: To give information not opinions. The pictures and notes are here to help you make the best choice for you.
1 cup of dry split peas (cooked in 3 cups of water)
4 large Medjool dates (3oz)
2-4 teaspoons of vanilla
1/4 cup of Sunflower oil (or oil of choice)
7-10 cups of water
Cooking the split peas: Place 1 cup of dried peas into a bowl and cover with 3 cups of water. Let sit for 8 hours or overnight. Transfer the peas into a pot or into the pressure cooker. If cooking on the stove, cook peas about 1-1 1/2 hours or until the peas are completely soft and all of the water has been absorbed. Stir. Note: If using an electric pressure cooker, there is no need to soak the peas overnight. Select “beans/lentils” and adjust the time setting to 30 minutes. Once the timer goes off, allow the pressure to release naturally. This may take up to 15 minutes. Remove lid and stir. Note, if using the pressure cooker it is important NOT to use the quick release. The starch in peas is very light. Using the quick release up and out of the pressure cooker through the valve making a mess:
Making the milk:
Place 1 1/2 cups of cooked peas into the large (64oz) Vitamix container. Add 3 1/2-5 cups of water, dates, 1/2 of the oil (5 teaspoons) and vanilla and let stand (to soften the dates) for 30 minutes. Blend on High for 1 minute or use the “Smoothie” setting. Transfer first batch to mason jars and ice cube trays. Repeat the process with the remaining ingredients. If If the texture is not to your liking, you may want to run the milk through a nut milk bag to remove the starchy component of the peas.
Please keep in mind that, if you need it to have a higher caloric content, you will lose quite a few calories this way. The milk will keep fresh for about 4 days in the refrigerator. How quickly you use the milk will help you decide how much to freeze. After I use what is in the refrigerator, I take out only what I will use the next day and let it thaw overnight.
Food tips: Although sunflower oil is listed, I used grape seed oil because I didn’t have any and couldn’t find any. Other oils will work but I would hesitate using coconut oil. Coconut oil is solid at room temperature and could clog g-tubes if the milk separates when chilled. I put sunflower oil in the recipe because that is the oil listed on the Ripple label. I don’t know if it would taste any different since vegetable oil is pretty tasteless. I’m sure it’s better for you so use it if you can find it and afford it. Be sure to pit the dates before putting them into the blender. I don’t use pitted dates in my recipes because they are too dry and sometime the pits are not completely removed. Calories/cup are 141.5. The breakdown is in the Cronometer picture below. Because Ripple is making it’s milk from extracted pea protein and not whole peas, their protein content will be higher. Other than that, my DIY version of vanilla Ripple is pretty close if it is consumed unfiltered:
Time tip: If you have a pressure cooker, use it. Time and clean up can be cut in half that way. Freezing the extra milk in ice cube trays makes it easy to defrost exactly what you want. Each standard ice cube is 1 once.
Money Tip: Buying your peas from a bulk food store like Winco Foods is the best money saver. Most of their bulk food items are 1/3 to 1/2 the cost of those bought prepackaged. It also saves on waste because you only buy what you need.
“HELP! My DYI Ripple doesn’t taste, look or feel like the store bought one!” And, it won’t. Ripple is made in a lab where they are able to isolate the pea protein from split peas while our home versions are, well, made in our kitchens. We do not have machines that can do that. Also they add oil and different gums that keep it homogenized and smooth. Last time I checked I could not just walk into the grocery store and buy guar gum. Don’t get me wrong. I have nothing against Ripple. In fact, now that I have tried it, I think it’s pretty good.
So why bother making my own? Certainly going to the store and buying a bottle is far more convenient and less time consuming. I’ll be honest. It’s the cost. In fact that’s why I choose to make my own hemp , coconut and almond milks. When the doctor says Matthew’s calories need to increase by 200 calories a day, the cash register goes off in my head. Let’s do the math. Each 48oz bottle of Ripple costs $4.99. That’s 6 cups. If each cup is 70 calories, I am going to need to add almost 3 cups a day to his current diet. So the bottle will only last about 2 days. Lets’ say I buy 3 bottles a week. That’s $15 a week or $60 a month just on Ripple! Since that is not an option for me (and I’m guessing not for you either) getting as close to taste, consistency and texture is my goal. I have made a new batch that is much closer and it does not separate. That post is coming soon.
In the mean time, if you are interested in seeing how Ripple is made, I found an interview sheds some light on how it’s made. Obviously the cost is somewhat justifiable with all that they have to do to make it taste the way it does. Personally, I’d rather adjust my taste buds a bit and spend the money elsewhere. But, if I’m in a pinch, I will not feel guilty about buying a bottle now and then.
This was an unexpected surprise! I was originally trying to add more fiber to the Poopinator Plus because we are still waiting on a referral to UCLA Children’s Hospital for a more in depth motility. I also thought it would help his weight loss issue due his currently very limited diet. Sadly the fig gave him too much gas so I had to pull it out. But, as always, I try all of his blends to make sure they taste good and this was amazing! So far, with only 2 calorie dense ingredients an zero prep time this is by far the easiest, highest fiber calorie booster I have made to date.
Place the ingredients to the 32oz Vitamix container in the order listed and secure lid.
Let sit for 20 minutes to soften the figs.
Select Variable 1.
Turn machine on and quickly increase speed to Variable 10, then to High.
Blend until completely smooth (approximately 1-2 minutes), using the tamper to press the ingredients into the blades.
Food Tips: This recipe packs 56.8 calories per 1 ounce serving. That makes it a good calorie booster without added sugars and/or syrup. Because it’s important for oral eaters, I always taste my recipes. This tastes amazing on toast (as seen in the picture). By itself it’s pretty sweet but added to other pureed dessert or snack recipes, I think it would tastes great.
Time tip: Freeze this butter in ice cube trays then pop them out into freezer bags for easy storage and quick defrost.
Money Tip: As with most of my ingredients, the figs and hemp seed are best purchased at a bulk food store like Winco. The prices are always much lower and you can by just what you need so there’s no waste.
Anyone’s Vitamix container looking like the first two pictures? Don’t worry. It’s not dangerous. I blend lots of fruits and leafy greens and I only recently started having this problem. Normally this is my routine after blending:
Rinse the container thoroughly
Fill 1/2 way with warm water and 2 drops of dish soap
Run the machine on high for 1 minute
Rinse and dry upside down in a dish rack
The container can be put into the dishwasher but, I use mine so much that it I need it ready at all times and you can’t beat a 1 minute wash cycle. So why is my container looking like this now? I began using peppermint and chamomile tea as the base for Matthew’s green smoothie instead of plain water. The film is a build up of oils and minerals from the tea. So, now when the container starts looking like that I:
Add 1/2 cup of white vinegar for 32oz containers and 1 cup for 64oz containers.
Add hot water until the container is half full.
Turn the machine on with it set to Variable 1.
Quickly increase the speed to Variable 10, then to High.
Blend for 15 seconds to mix the water and vinegar.
Let sit for about 15 minutes.
Pour the vinegar and water solution over a clean sponge or dish cloth then dump the rest down the sink. Use the sponge or dishcloth to clean any tough stains that might be left behind.
Rinse the container then refill half way with fresh water.
Repeat steps 3-5.
Empty and let stand upside down to dry completely.
If you have let your container build up a thick film or if you are a stickler like me, you may want to put a little baking soda on the cloth or sponge and give the inside another go. This is totally optional. It you are on a tight time schedule, this step is not necessary. FYI, if you are thinking of short cutting by using the baking soda and vinegar from the beginning, DON’T! Remember that active volcano replica you made back in grade school? No? Ok, I may be dating myself. If you do you will end up with:
So I just got through having a very interesting conversation with a fellow tubie mom. She was looking for advice because her son had suddenly been vomiting his morning blends. At first she thought it might be a cold but no other symptoms arose. He was tolerating broth and baby food so it did not sound like a flu bug. Then she mentioned a change in the coconut milk she had been buying for her blends. She went from using Silk coconut milk to using Simple Truth coconut milk. She questioned whether or not it might be a particular additive in the Simple Truth that was not in the Silk. That additive was Carrageenen. Since I make my milks fresh, I hadn’t thought about additives and the side effects they might have. I vaguely remember hearing the name but had no idea what it was so I hung up the phone and went looking.
After clicking on the first website that spoke about it and reading the contents, a light bulb went off. There was a quote from an article that made me feel that this mom had hit the nail on the head:
“Although derived from a natural source, carrageenan appears to be particularly destructive to the digestive system, triggering an immune response similar to that your body has when invaded by pathogens like Salmonella. The result: “Carrageenan predictably causes inflammation, which can lead to ulcerations and bleeding,” explains veteran carrageenan researcher Joanne Tobacman, MD, associate professor of clinical medicine at the University of Illinois School of Medicine at Chicago. She says the food ingredient irritates by activating an immune response that dials up inflammation. Her previous work showed a concerning connection between carrageenan and gastrointestinal cancer in lab animals, and she’s involved with ongoing research funded through the National Institutes of Health that is investigating carrageenan’s effect on ulcerative colitis and other diseases like diabetes.”
And what do pathogens like Salmonella trigger the body to do? You guessed it. Vomit. Unfortunately a lot of organic foods add these ingredients to stabilize their products and add shelf life. So it could be that or a number of different additives that could be causing this little tubie’s tummy troubles. The best answer is to go back to what was working. If the vomiting stops, you’ve at least solved the immediate problem. Then, keep a list of ingredients of the problem item in a file. If a similar problem arises from another product compare the ingredients to see what they have in common. Then research the side effects of those ingredients so that you can narrow down the list culprits.
It is best, whenever possible to make your own milks. That way you know exactly what is in it and what, if anything, needs to be removed. It is also much more cost effective. I do understand that not everyone has the time to do this. But, if you are cooking and/or blending for someone on a specialized diet or has multiple allergies/sensitivities, it is well worth the time and effort.
If you are interested in reading more about Carrageenan this article contains a lot of interesting information.
Matthew did very well on the Poopinator for a time. Then slowly it stopped working and he began backing up again. We had to put him back on Miralax, added Lactulose, Senna Plus, Enemeez and eventually the Peristeen pump. Each addition brought some relief for a time but then stopped working. He ended up back in the hospital for yet another clean out in October and to complete some much needed testing. After a Sitz Marker Study, we came to the conclusion that there was no specific areas of colonic inertia . His infectious Disease doctor highly suspects the backing up of his bowels was the cause of the g-tube stoma infection and the GI doctors are suggesting an Apendicostomy.
So here we are caught between a rock and a hard place. Matt eats most of his blends by mouth but gets meds, extra water, the Poopinator and an overnight feeding of green smoothie. Because of issues with his immune system, having an Appendicostomy done most likely would increase his chances of infection. On the other hand, after 16 years of major GI issues, I can’t see how I could maintain his nutrition and medication regimen without the g-tube.
So now I am on a mission. Delay or completely avoid another surgery. He has been drinking a blend throughout the day that contains hemp milk and it seems to bring him some relief. Then it came to me: Why not give him a straight shot of it with The Poopinator? It might have a better effect that way.
4oz of the original recipe or any combination of the foods listed in The Poopinator
Directions: Warm the Poopinator THEN add the hemp milk or kefir. I have found that warming the Poopinator Plus in the microwave causes the hemp milk to clump. That can cause an extension tube to clog. I have also noted that heating hemp milk in a recipe causes it to thicken. Also, if you are using kefir, you will want to add it after the mixture has been warmed to avoid killing off the good bacteria. Give as a bolus at the fastest rate that is tolerated. Flush with at least 10cc of water. If the volume is too high, reduce the solids before reducing the hemp milk until a tolerable volume is reached.
Please remember this: Medication and/or surgical intervention is not a failure on your part (somehow I think I’m talking to myself here). The goal is to do whatever it takes to give our loved one(s) the best quality of life possible. Blended whole foods is by far the best choice over formulas but sometimes it’s just not enough. Hang in there and don’t quit!
One thing about fresh coconut milk: It only lasts about 4-5 days in the refrigerator. So once you make it , you will want to get the most out of your fresh batch before you have to freeze what’s left. Since I already have the chia seeds out when I’m making Matt’s oatmeal, I always make some chia seed pudding. This is one of my favorite snacks and it’s easy to make.
2 Tablespoons of Chia seeds
1/2-2/3 cup of fresh coconut milk
Put the Chia seeds in a small mason jar. Add the coconut milk and stir until they begin to absorb enough of the milk to be suspended. Cover and refrigerate for 1 hour. The Chia seed pudding is good for about 4 days but, I guarantee that it won’t last that long. Enjoy! Makes 2 servings.
Food Tip: This snack is high in protein but also high in fat. Eat it sparingly especially if you are making your own coconut milk.
Time Tip: Freeze the coconut meat in 6oz portions. When it’s time to make your milk just defrost and blend.
Money Tip: Coconuts are not that expensive. They tend to run about $2 but the price drops around Thanksgiving and Christmas.