Being told your child is going to need a feeding tube, is heart breaking. Not only does it initially feel like a failure, or a loss of hope that your child will be able to eat, but there's a lot to deal with when a g-tube is placed and it's a pretty scary situation at the beginning. Not only that, but I have yet to hear from a parent that anything other than formula was suggested for their child's enteral nutrition. Sure, there may be the option of one formula brand versus another formula brand, but that's it, formula is the only option given to parents.
I believe in nutrition as a form of healing and unfortunately, corn syrup doesn't rank high, or at all, on the list of foods leading to a sustainable and energetic lifestyle. This is why when I saw that my son was not thriving on formula, I had to make a change, and that change began with whole foods.
Julie Bombacino is another mom who quickly learned the effects formula had on her son. She did her research and began feeding her son a blended diet rich in good fats, protein and calories that weren't based on unpronounceable ingredients and mainly comprised of corn syrup. Julie realized the need for tubies to have an option other than formula, and she also had the knowledge and wherewithal to become the founder and CEO of the company Real Food Blends.
I think it is incredibly exciting to see this company develop and launch their first few meals. Recently, Isaac had the opportunity to try out the three meals offered by Real Food Blends, and I have to say, it was so convenient and I loved having a break from mixing up my own blends and doing all of the cleanup that is involved. Unfortunately, Isaac can't share his own opinion, but he didn't have any adverse reaction to the ingredients. I did slightly thin the Quinoa and Chicken Meals with water or hemp milk since Isaac doesn't need quite that many calories and fat in eight ounces, but it was great because I was able to get a little more than one feeding out of each pouch. I also thinned the meals because Isaac is very particular about his feeding routine and cooperates best when we use the pump for his feedings. Using the pump requires that the blend be relatively close to the thickness of formula.
Now, as for the ingredients. It really is made out of real food. Check it out:
Salmon Oats and Squash: Water, Squash puree, salmon, pomegranate juice concentrate, rolled oats, flaxseed oil.
Quinoa Kale and Hemp: Water, Kale, Grape Juice Concentrate, Hemp Powder, Extra Virgin Olive Oil, Quinoa, Cinnamon
Orange Chicken, Carrots and Barley: Orange Juice, Cooked Chicken, Carrots, Pearl Barley, Grapeseed Oil, Water, Ginger, Roasted Sunflower Seeds
As stated on the company's web-site: "We are not medical professionals and are not making any medical claims about our food. Our meals are truly just real food. Please work with your medical team before making any changes to your diet, especially if you are tube-fed."
The company's Advisory Board does include a dietitian and the first two meals are FDA approved and the chicken meal is USDA approved. Real Food Blends also makes no claim that their blends provide complete nutrition and readily state, "The same way that oral eaters need to eat a wide variety of foods over the course of a day or week to achieve necessary nutrients, our meals are just that – meals. They are not intended to be anyone’s sole source of nutrition. They are each well-balanced and together offer a good variety. We developed these first meals with the intention that someone who is living off 6 or 8 cans of formula a day could easily add some nutritional variety to their diet by replacing a can or two with some real food meals. Those that already blenderize for tube-feeding can use our meals as a convenient option."
A big consideration for families with high medical costs is always whether or not insurance will cover enteral nutrition and all of the other medical supplies that are required for tube feeding. Real Food Blends is working hard to gain insurance coverage and reimbursement for families caring for a loved one with a feeding tube. Just last week, they were able to announce this exciting update: "We are pleased to announce that Real Food Blends™ products have been approved by the Center for Medicare & Medicaid Services Healthcare Common Procedure Coding System (HCPCS) for code B4149. The code B4149 applies to enteral formula, manufactured blenderized natural foods with intact nutrients, includes proteins, fats, carbohydrates, vitamins and minerals, may include fiber, administered through an enteral feeding tube, 100 calories = 1 unit."
Please check the Real Food Blends web-site for more information regarding Medicare and Medicaid coverage.
I think it's revolutionary that Julie saw a need for children and adults dependent on enteral nutrition, and she did something about it. Even for someone like me who is already creating my own blends, Real Food Blends has it's time and place. This past weekend, in preparation for an overnight trip to visit family, I packed up two days of blended meals for Isaac and was counting on the fridge in the hotel room to be cold enough for his food, and it wasn't. I had to dump all of that food I'd prepared for Isaac. Thankfully I always travel with formula, so I had that on hand, but I wish I'd had Real Food Blends instead. If you are already used to blending your own meals, that's great, and I know that Julie is not trying to use her company to replace the work you are already doing at home. What she is trying to do, is provide convenience for traveling or hospital stays.
Please also take a moment to read an adult tubie's review of Real Food Blends. Not only does he endorse this product, but he also shares what it feels like to live on a formula diet. Most children with special needs are unable to verbalize how food makes them feel. I have to observe Isaac's mood, bowel movements, sleep and energy levels in order to know anything about how what he eats is making him feel. It really is amazing what a difference in diet can do for a person, especially someone who is already battling a host of medical issues. It seems that in cases such as these, medical professionals should be more willing and open to the clear benefit of a healthy diet. Now that Real Food Blends is on the market, I think it will help more parents begin the conversation with dietitians and physicians in an effort to move from formula to whole foods for their loved ones who depend on enteral nutrition.
Julie Bombacino's story (founder and CEO, Real Food Blends)
Product Endorsement: The Blog of the Traveling Tubie
Nutrition Facts, Real Food Blends
To order Real Food Blends click here!
Tuesday, March 4, 2014
Friday, February 21, 2014
Walter has been asking me for weeks when I am going to write another blog post. It's funny because he didn't even want me to start a blog in the first place, and since I'm a good wife who listens...I started a blog. I took his opinion under consideration. That's really all one can expect. Now he checks daily for a new post and comes home from work and asks when I'm going to post something new.
This is simply a list of highlights and some pictures from the last month of our own Long Winter like Laura Ingalls Wilder wrote about in her sixth book. Isabella and I have listened to over twenty-seven hours of Little House on the Prairie audio since January 3rd (we skipped Farmer Boy). We've both enjoyed every minute of it and we've had some really good discussions about the books and new vocabulary.
*Isaac's speech is on fire. It's really incredible that a year ago he said about ten understandable words and still mainly used sign language, and now he is forming sentences. Last night he tried to convince me that he should stay home alone and wait for Walter, while I took Isabella to ballet: "Ma, me stay me house. No go you guys. Me wait daddy come me house."
*Isabella is learning how to cook. I don't really know how this started, because generally I like to cook without people talking to me and crowding my space, but then I realized that I don't want her to be helpless in the kitchen so I gave in to her participation. She's actually become quite handy. She can crack eggs, make homemade tomato sauce with some instruction, cook oatmeal for breakfast, and a few other things.
*Isabella's favorite subject is spelling. I usually get so frustrated with her because she constantly asks when Isaac is going down for a nap which in turn makes Isaac scream because he is in denial that naps are vital to our well-being, so yesterday she spelled out the complete sentence: "When-will-it-be-nap-time question mark". She got an A for spelling since she spelled every word correctly.
*Isaac can now say his name and no longer calls himself, "Ike".
*We learned how to blend with oil pastels.
This is how she looks when she catches me taking her picture...
This is what I usually lead you to believe it looks like when I take her picture...
*As it turns out, Isaac loves unloading the silverware from the dishwasher.
*Isabella has exceeding my reading expectations for this year. It is so fun to see her read for pleasure and also for her own education on whatever topic she is interested in. We always have library books strewn about the house.
*Isaac keeps himself entertained pretty well during our lessons. Sometimes he even tries to participate during recitations.
Building two syllable words as part of the All About Spelling (level 2) program...
*Isabella and I rearranged the living-room. The change lasted for less than twenty-four hours because Walter couldn't handle the new look.
*Isaac crosses his arms and looks the other direction when we tell him something he doesn't want to hear. I laugh every time.
Trying to change up a spelling and dictation lesson with dry erase boards...
*I've been knitting a scarf instead of reading or writing. And our big family news is that Walter will begin a new job on March 10th.
My next post will be a product review of Real Food Blends, so please check back for that and learn about what one mom is doing to revolutionize packaged food for tubies.
Wednesday, January 15, 2014
On Sunday I was talking with my mom and reflecting back on our journey with Isaac, and it hit me that I have finally found my stride in this world of special needs. It has taken three years, almost four, actually, but here I am, more awake than ever. I've spent the last three years tired with my eyes half open. That's not to say I am bursting with energy, because I'm not, but I'm happier with the energy that I do have.
When I was pregnant with Isabella, other parents used to tell me: Just give it six to eight weeks, and things will get better! Before she was born, I had no idea what they were talking about. Then she was born and, well, I was in the club and they were right, around eight weeks things got better and I found my footing as a new mom.
That wasn't the case with Isaac. At eight weeks we found out that instead of needing a laproscopic surgery that would require a very small incision into his skull and a very short surgery, he would need a full blown cranial vault reconstruction and orbital advancement which would require an incision going all the way from ear to ear, and would be a six to eight hour surgery...but actually ended up being a twelve hour surgery. Add to that the fact that he spent almost all of his waking hours screaming, or crying (I'm sure you know the difference if you're a parent). The screaming went on for over two years.
I feel like due to his medical history, I've bonded and re-bonded so many times over the past few years with Isaac, that I know him inside and out. I have probably grown to over-calculated his needs or responses to situations and I'm just beginning to loosen the reigns and give up a little bit of control at a time. Preschool has helped a lot. I know that I can leave him in a safe place and he will be able to manage just fine without me. But I am always so eager to pick him up from school because he has grown from a screamer, to a really funny little guy.
Maybe when special needs becomes a household word in your home, it takes three years, instead of six to eight weeks to find your ground. For the most part, we have our plan, we know what appointments are necessary and what goals need to be met. This morning as I was talking with a mom in the waiting room at Isaac's therapy appointment about friendship among children who have special needs, I shared that I worry about the future for Isaac and whether or not he will be accepted. I told her how much I love to see that his preschool classmates interact with him and get excited to see him join the class in the morning, but I don't know what that will look like in five or ten years. Conversations and topics like that, still bring strong emotions to the surface.
I never thought I would love to live in a bubble. But I love the safe bubble my home provides for me and for Isaac. In our house, I forget that he has developmental delays, and I forget that a three year old not using his mouth to eat is abnormal, and I forget that he's almost four and I'm still changing his diaper. Within these walls the differences aren't as apparent.
Last week, in pictures...
"When I grow up, I want to be an artist and make my masterpiece just like this. But I'll have to ask the director at the art museum if it's okay for me to make my masterpiece this way."
"Isaac, I have to go to the bathroom. Let me know if you see any birds!"
...."See bird! Me see bird!"
"You saw a bird? I didn't get to the see the bird! I'll never see a bird!" and so begins the crying.
If you're new to special needs, and you feel like you're drowning, it will get better. Maybe it will take only a few months for you, or maybe five years instead of three, but you'll find your ground. And I guarantee you will be stronger than you ever thought possible.