Over the course of my daughter’s 14.5 year life, we have had new symptoms pop up every couple years. This year was no exception. She began fainting. It first happened on the beach at 8:00 in the morning. If it … Continue reading
Natalie has had LOTS of genetic testing. There’s never been a diagnosis that encompasses more than one or two of her … issues. I remember her old neurologist – back when she had seizures – said he was sure she … Continue reading
Here is the link to my article published in Complex Child Magazine.
It is called “Living at Natalie’s Speed” … I wrote it as a reminder to myself, and to anyone else who needs it, that one of the positive aspects of our special needs family member is the necessity of slowing down. I normally live at Mach 10, but with Natalie, life goes much slower, and I am actually happier that way. Life is sweeter at a slower pace.
That being said, I just started a job today. We’ll see how that mixes in!
Beets seem like the funniest little vegetables. In our culture, we don’t really consume them often, but they have some important nutrition, especially when raw! Here are some facts I’ve found on the internet, specifically at a website called The World’s Healthiest Foods:
Beets belong to the chenopod family which has some unique health values not readily available in other foods. Chenopods include chard, spinach, and quinoa. Here are a couple things you want to know about beets:
- There is a special connection between their phytonutrients and our nervous system health
- In a recent lab study on human tumor cells, betanin pigments from beets have been shown to lessen tumor cell growth
- The longer you cook beets, the more they lose the betalains’ nutrient value
- The phytonutrients betanin and vulgaxanthin have both been shown to provide antioxidant, anti-inflammatory, and detoxification support
- They are a wonderful source of folate
- Beet greens are incredibly rich in nutrients
Feeding someone via g-tube for medical reasons is most typically done via “formula”, for instance Pediasure, Enfamil, Ensure. When we take just a MOMENT to see what all the food experts recommend, it is clear they believe whole foods are better than supplements. Getting our nutrition from the actual foods we eat, as opposed to a “formula” is recommended everywhere I look. I have yet to hear a single nutrition expert say “Go buy a bunch of Ensure and drink that every day for best nutrition. And give your kids Pediasure… much better than the food at the grocery store.” So I continue to believe feeding my g-tube dependent daughter blended meals, rather than “formula” is best for her. By blended meals, I mean taking actual food, blending it in my super-duper blender and giving it to her through her tube.
It isn’t necessary that we turn blended meals into a fancy formula, or detailed recipe, or anything that complex. Think of all the toddlers running around, growing, sleeping, laughing, and learning who survive on cheerios, applesauce and grilled cheese sandwiches who REFUSE to eat any vegetables! I would guess that most of the people who are tube-dependent for nutrition have some overarching medical condition that necessitates the g-tube. Those medical conditions may require avoiding certain foods. Those medical conditions may have something to do with a fragile digestive system, so consult a physician first!
If your tube-dependent person can have real food, then a blended meal is certainly a possibility! Don’t stress over doing it “exactly right”. There is no such thing. We do not eat exactly the same things, same amounts, same nutrients every day ourselves. Our hunger waxes and wanes, our cravings wane. Some days I am desperate for lots of green food! Some days, I can tell I need more protein. This is true for tube-dependent people as well.
Generally, however, there are ratios we can follow for proteins, fats, and carbs:
Protein: 25 – 35% of total calories
Carbohydrate:s 40 – 50%
Fats: 20 – 30%
With carbohydrates at 40 – 50% it will take more than green veggies or fruits! This is where grains and beans come in. More on this next post, plus a new recipe!
Life is hard, no? Looking at the news footage of recent events in the USA, tornadoes, earthquakes, hurricanes, it reminds me that we each get hit with storms – the storms of life. Some of us live in a perpetual storm, of sorts. Living with chronic, complex care needs is a storm, imho. If you are not currently feeding via blended meals, but hovering on the periphery considering it, please DO NOT FEEL GUILTY! In my emails, my signature includes a quote from Lori Borgman. I don’t know Lori but I like what she says:
“I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.”
So as you sit there wondering “if” you can do this blended meals thing, “if” you want to even undertake such a task, give yourself a break. Your energy might be maxed out with what you are already doing. Each of us can only do so much. If you need to, wait. Or decline altogether. And please, don’t feel guilty. Please. There are storms enough, without giving ourselves a guilt storm.
“This man beside us also has a hard fight with an unfavouring world, with strong temptations, with doubts and fears, with wounds of the past which have skinned over, but which smart when they are touched. It is a fact, however surprising. And when this occurs to us we are moved to deal kindly with him, to bid him be of good cheer, to let him understand that we are also fighting a battle; we are bound not to irritate him, nor press hardly upon him nor help his lower self.” Rev. John Watson aka Ian McLaren.
Also quoted as: “Let us be kind, one to another, for most of us are fighting a hard battle.”
In the world of chronic complex care, like tube-feeding, g-tubes, medications, etc., it can be hard to keep track of all the things we do in caring for another. My special needs daughter has had multiple meds in her past, and is fed via g-tube four times a day. Feeding her four times a day involves bolus feeds using a 60 cc syringe 9 times at 3 minutes intervals. I use my kitchen timer for this at home. When I’m out and about I can use my cellphone or my watch. There is an easier way to manage multiple timed events.
ITZBEEN, (as in “it’s been” 3 hours), seems like a great tool for keeping track of multiple tasks or events. While the button labels on this handy item are labeled with graphics for diaper, feeding, and sleeping, there is a blank button for timing additional items. Of course, you could always put stickers on the buttons to change their meaning. It has a display backlight, and a clip on the back to keep it handy. (I’m thinking clipping it inside a tote bag, purse, etc. would be helpful on the go.) The alarm feature is optional and can be muted. Some brilliant engineer came up with this because it also has a button lock, preventing accidental reset of the buttons. It uses 3 AAA batteries. I’ve contacted the company and am awaiting a reply to see if it has a spot for an AC adapter.
It is listed on Amazon, other online retailers and is available at many upscale baby stores. Retail price is usually $24.99
The company is sending me one to test and review, so I’ll post an update after I’ve tried it out for a while!