Tuesday, March 25, 2014

How to Fall and Get Back Up

Our community offers access to wonderful activities for homeschool students. Never fear, my daughter will not be socially inept although, she does act like a six year old and from what I can tell, being six means being fabulous, confusing, unresponsive, obnoxious and hilarious all in the span of thirty minutes.

Anyway...Isabella has asked us three hundred times since last winter to take her ice-skating, so when I saw that Kent State University was planning a two hour ice-skating session for homeschoolers, I jumped on the opportunity. Walter was also able to come and even got out there on the ice with Isabella after the formal teaching portion was over. 

The very first thing they taught the group of eager students, was how to fall, and how to get back up. This proved a very good lesson since most students spent the first half hour falling and getting back up. The parents watched and let out quiet, "oh, that must have hurt"..."ouch"..."there they go again"..."they'll get it". And they did get it (most of them). I stood behind the Plexiglas window and remembered the months when Isabella was learning how to walk. I used to watch her in awe. Really, any toddler is the perfect example of the human spirit. They fall, and they get back up. Quitting isn't an option. We've all done it, and we all took on the challenge of walking, fearlessly, but when was the spirit of "try and try again" crushed to the point that maybe we gave up trying?

Parenting gives me a daily opportunity to get up and try again. At times I lie in bed at night and wonder how our day could have gone so terribly wrong, but quitting is not an option. So I begin the next day with a new resolve and God-given grace and clarity.

Isabella is so much braver than I feel I have ever been. She jumps on every opportunity to try something new, and love I this about her. My children offer the daily reminder that I must not give up on my passions, I must not give up on my faith and demonstrating my faith to my children, I must forgive myself, and if I fall, I must get up again.

Friday, March 21, 2014

The Gift of Predictability

It's no secret that we've been on a long journey since Isaac's birth. In less than a month we will celebrate his fourth birthday. I carefully chose the word 'celebrate' because this is truly a year to celebrate. Finally, I am able to find joy and peace in mothering him. Since September it has felt less like toughing it out and barely making it through each day and night, and more of a chance to watch my son blossom into a toddler and little boy who does little boy things and less baby things. This time in my life, is a gift, and each day I am thankful for the road I traveled to get to this place, and the daily opportunity to share happy moments with Isaac. 

My years with Isaac have been filled with one doctor appointment after another, and one therapy appointment after another, and one more season of trying to get him to eat orally, and one crabby day and night after another. Now, there are less appointments, we know what is ahead of us, our therapy appointments are regular, and as far as feeding, it is mostly off my radar. I should probably address why feeding isn't important right now, since some readers may be freaking out. Isaac is hitting major developmental milestones and I am happy to enjoy this wonderful ride as it is right now. Feeding is so stressful for me and for Isaac. There really isn't another party involved in this equation of feeding Isaac, and I am not ready to jump back on that ship that was previously sinking at a very alarming rate. So for now, we will continue a gentle food experience during speech therapy and occupational therapy, and obviously, at home. 

I am enjoying the long lost gift of predictability in our days so much so that I rarely want to leave my house! I was discussing this with my mom and told her that I just don't feel like talking to people and I don't feel like being in a group and I certainly don't want to miss nap time, so unless I have to go somewhere, for the most part we stay at home. This business of "staying home" is relatively new to me. After Isabella was born I had to be out of the house pretty much all day, every day, or I thought I would go insane. And then with Isaac I didn't have a choice because we had all of those appointments. At this stage, I'm done being away from home. I enjoy watching my children play quietly and love that we finally have a predictable routine to our days. The more important thing now is to keep up with Isaac's feeding schedule and his nap, and allow chunks of time to make transitions less stressful. It has also been a long, cold winter here in Ohio, so I've enjoyed our quiet mornings and afternoons. 

We did make a quick trip to meet our newest niece. This was a sort of test run for our planned summer vacation. Isaac did really well, but it confirmed how challenging it is to feed him when we are away from home. He is a creature of habit and gets very angry about feeds when he is away from his precious high chair.

Isaac, drinking water from a spoon.

I think this will a wonderful spring and summer with Isaac. We are a family that loves to be outside and until this point it has been very challenging to get Isaac to love the outdoors. On the handful of nice days we've had this year, he has actually wanted to play outside and even threw a tantrum a few nights ago when we told him we had to go inside. This is quite an exciting improvement.

We go to the library a lot, and Isabella participates in weekly swim lessons, church activities and ballet class.

About a month ago I changed math programs with Isabella. Math U See is proving a wonderful change and is really helping solidify some key concepts. And who wouldn't want to play with cool math blocks?

Did you notice the Mario stickers on the wall? Isaac is obsessed with all things Mario and Luigi. He talks about them constantly. I often have to say, "Isaac, we're going to take a break now from talking about Mario." He'll say, "Okay, mommy. Me wait, me daddy come home. Daddy eat, daddy play mo wii (Mario on the Wii)."

I finished the scarf I mentioned in a previous post. It came out really well and I enjoyed the process of making it. For other knitters out there, I did choose to block it and am happy with result.

The kids just came in from playing outside together for almost two hours. Isabella could happily spend all day outside doing whatever it is she does, so I am thankful that she is a wonderful example for Isaac.

Happy Spring,


Tuesday, March 4, 2014

Product Review: Real Food Blends

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!