One of the most satisifying adventures I have undertaken in recent years, has been to switch Nesiah to a blended diet. Her team with NACD wanted me to have her eat real food by mouth.I wanted her eating healthy food. I am a firm believer in a well fed, well rested child is a well behaved child.
So we attempted feeding Nesiah by mouth but I was not successful in getting enough calories into her. Her team kept pushing me to put more time and effort into this. So I decided to do some research and figure out a way to get real food into her without the time consuming task of feeding her by mouth. In my research I discovered some very interesting things! Most importantly I found this facebook group of mommas that feed their kids blended diets through the gtube.
So I joined this facebook group and did my research. I asked a million questions and grew more fascinated every day. These mommas are truly amazing! There is an amazing difference in kids who consume real food vs the sugary formulas.
This from the Blenderized RN Fb page, a basic outline of the most popular pediatric formula. Pediasure.
Blenderized RN assessment
1. A regular diet should be balanced with 50% carbohydrates, fats 30-35% and protein 15-20%.
Pediasure is 59% corn syrup with a total of 67% of carbs and doesn’t have the correct percentages
for a well balanced diet.
2. The World Health Organization says sugar should make up no more than 5% of a child’s daily diet.
The daily amount of corn syrup in this diet is 109 grams or 59% of the total diet. That is almost 12
TIMES the recommended sugar amount.
3. Protein should be derived from plant-based sources within the diet along with animal based
sources. Using whey might cause stress on the kidneys because not only is the protein double the
recommended amount but it is only from an animal source.
4. Because corn syrup itself doesn’t have any nutritional value the formula needs to be
supplemented with man made vitamins and minerals. Essentially there is NO FOOD in this can
So after all my research I was ready to get started. I started blending food in the ninja (that I picked up at a yardsale last summer). Nesiah seemed to be calmer and happier within a day or two. Even my babysitter commented on the difference in her personality. Nesiah is doing new things and making great progress. She was amazing all of us.. Then my ninja died.
So no blender meant no blended diet. I freaked out, cried a little and prayed a lot. It was Sunday morning. I was so upset over this. I prayed that God would provide the funds for a new blender. My research had shown that a Blendtec was the best blender for blends. They make blends that totally make your life easier. They are fast and good.. and REALLY REALLY PRICEY. So I prayed..
Not an hour later, I got a message on fb from someone who had seen a post I had made after my blender broke. They wanted to buy me a blender, of my choice. I was a little in awe of how fast God had answered my prayers and yet a embarrassed to tell this amazing person that what I really wanted/needed was a $400 blender. Long story short.. We ended up finding one on Groupon for a lot less and this amazing lady blessed us with a new blendtec.
I was so tickled to have the blendtec. It made blends so much easier and we mixed all kinds of yummy foods together for Abi. The big kids drink 5-8 smoothies almost every day. I even discovered I could make sunbutter for my peanut allergy kiddoe!! We had so much fun with this blendtec!
Then one day as I was using it, only about a week after receiving it, it started shaking and rattling when I used it. I nursed it along, trying to figure out why it was having these issues. The day before Thanksgiving I was making sunflower butter for Bubs and the blade just fell right out of the bottom of the pitcher. I was soooooo upset. But... ahhh I had registered for a warranty the day I received it! So I called blendtec. The guy says "oh, yea you have the 2015 model. We have all kinds of problems with them. I will send you a new jar immediately!" Two weeks later, my new jar arrived and we are back in business!
Now Nesiah gets to eat normal food. Today she had quinoa, chicken breast, corn, peas, carrots, coconut cream and a bit of sunflower oil. Breakfast was oatmeal, eggs, coconut cream, chia seeds and some bone broth. We just throw everything in the Blendtec and within minutes we have a creamy yogurt consistency blend which I bolus feed in the gtube! It is truly the most satisfying feeling.
So far her bowel movements are improving, her cognitive levels are improving and she is stimming a lot less. IT is really not that much work for me since I have blendtec.
The second part of this story is only now unfolding. In my research I found this company called Real Food Blends. This company was started by a tubie momma who wanted real food for her kiddoe. I decided to look into getting this for Nesiah. Real Food Blends are foods like meat, potatoes and veggies blended and packaged then send out to families to feed their kiddoes. It works like formula but is truly real food. If I had this, I could blend once or twice a day and use this for the other meals.
The cost per day for this RFB would be approx $10 a day. We are on a strict and tight budget. There is no way that would fit into my budget.So I called the company to chat with someone about my options. I discovered that insurance will pay for RFB if a child is currently receiving formula.
So I called the insurance company, they said they would not cover it unless she had major food allergies. I just happened to stumble upon a code that was used to bill insurance. so I asked if this code would help them get me coverage. She put me on hold for a long time.. but came back and told me they would cover it after all!! Step one done.
So my next step was to call GI and see if they would write my script/orders to get these supplies. I was not very clear in my needs and stumbled a bit in explaining what I wanted. I was still trying to figure it all out and the nurse was not helpful.So she scheduled me for a medical appointment, 9 weeks away. I was not impressed but already had made an idiot out of myself so I shut up and prayed.
I called my Durable Medical Equipment company that delivers to us each month, formula, syringes, feeding tubes, and extensions. They informed me that they would not carry this product. So I did some research and discovered that there is a local DME company that does carry RFB. So I called W.S, I spoke to a wonderful lady who was beyond helpful. They had another child that got RFB. She explained to me, exactly what I would need and how much of each and how to present it to the Dr to get the best options for Nesiah. She did a bunch of behind the scenes paperwork and got everything ready for me. She laid out to me what I would need to do etc..
So now it was time to reapproach the GI. The nurse was no longer returning my phone calls. I prayed for several days trying to find a good option. Suddenly I remembered... I have an online account where I can contact the DR himself! So I wrote out a long email, detailing everything the DME and I had discussed. I proposed my plan to blend some but use the RFB and keep a bottle or two of the formula for each day. We have a caloric goal to meet each day. I sent the email and prayed, knowing I was going in over the nurse's head. Two days later, I received an email from the Dr. All it said was "I am in agreement. I have asked the nursing staff to take care of this." So that was yet another answer from God.
So I moved forward with getting everything set up between the insurance company, the DME and the GI. Yesterday I got a call from the DME, my first shipment will be out next week. I am sooo thrilled!
I will still be blending atleast 2 meals a day. I want to build a stockpile of RFB for when we travel or for those days when I am overwhelmed/tired/lazy and can not blend.
I love how God works. He placed this desire in my heart, then he provided each step of the way... Giving me what I needed.