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Category Archives: Special Needs

Lentils: Another Homemade Blended Formula Recipe

Lentils and Peasphoto by photobunny

As a vegetarian, I’ve known about the wonders of lentils for a while. Not only are they delicious (especially in a soup or stew), but they also provide a powerhouse of nutrition high in protein, calorie dense and balanced out with a healthy dose of carbs. Armed with this knowledge, I decided to try a recipe for Jenna’s homemade formula using lentils. Here’s what I came up with:

  • 1 c. Bob’s Red Mill Vegi Soup Mix  (green & yellow split peas, barley, lentils & vegi pasta)
  • 1/4 c. quinoa
  • 2 T raw honey (No children under age 1 should consume honey!)
  • 1 tsp nutmeg
  • 1 T ginger (read this, too)
  • 1 T cinnamon
  • 4 c. coconut milk
  • 1 c. goat’s milk kefir and here
  • 1 c. powdered goat’s milk
  • 2 T coconut oil
  • 2 T Udo’s 3-6-9 oil (read here for benefits)
  • 2 T Hemp butter
  • 1 c applesauce
  • 1 medium apple
  • 1 medium banana
  • 1 large carrot
  • 1 c. chopped spinach (dark, leafy greens are an often overlooked source of protein)
  • 3 T kelp powder read this also (especially for it’s iodine, iron & selenium)
  • 6 brazil nuts (for selenium)
  • 1 c. water

All my ingredients are organic from our local co-op.

Preparation is easy. I simmer the soup mix & quinoa in the 4 cups of coconut milk. While that’s simmering, I add all other ingredients to my Vita Mix blender and blend well. I add the mixture from the stove, blend very well (sometimes adding more water to achieve the desired consistency to pass through the feeding pump tubing) and pour into storage jars.

Nutritional info:

  • 2651 calories (30 cal/oz)
  • 112 grams of fat  (38% of total calories)
  • 90 grams of protein (14% of total calories)
  • 344 grams of carbohydrates (51% of total calories)

Good to know when making these calculations:

  • Fats have 9 calories per gram
  • Proteins & carbs have 4 calories per gram

I’d like to get the protein percentage a little higher and will probably do so by using more of the lentil soup mix the next time. BUT, even though the percentage of protein for the overall mixture is not as high as I’d like, I calculated what she consumes in a day and found that she’s still getting the 18 g/day recommended for her age and weight.

Happy cooking! Happy feeding!

 
 

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Fire Safety For Kids

firephoto by matthewvenn

We were in Chicago over the weekend and visited the Children’s Museum at Navy Pier. If you ever have a chance to go, I highly recommend it. One of their exhibits is on fire safety. There is a firetruck to climb on, fireman costumes to dress up in, pretend hoses to spray, flashing lights, radios, and a bedroom with lightweight fabric draped all around to simulate smoke. The bedroom is to train kids to “get low and go” to stay under the smoke. They find their way in the dark, under the hanging “smoke.” It’s a great opportunity to talk to kids about fire safety. They had brochures for parents to pick up, so I did. I know we need to work a little more on a concrete plan.

Here are the 10 Steps to Fire Safety (from the Chicago Fire Department):

Smoke Detectors Save Lives! Put a smoke detector outside your sleeping areas. Change batteries twice a year (when you change your clocks) and test them monthly so kids can hear the beeping sound.

Have an Escape Plan! Create and practice escape routes from different areas of your house – especially from your bedrooms at night.

Sleep With Doors Shut! Fire travels through open areas first. Closed doors help keep fire and smoke from spreading.

Get Low and Go! Smoke and heat rise toward the ceiling. Air is more breathable near the floor.

Never Hide – Crawl Outside! Young children may fear the sights and sounds of firefighting equipment. Talk about why they should NEVER hide from firefighters, no matter what.

Know Two Ways Out! A fire may block a certain path. Know two ways out of the house or building.

Feel Every Door! As you crawl, feel doors with the back of your hand. Don’t open a door if it’s hot – there may be flames on the other side.

Go to the Family Meeting Place! Make sure everyone knows where to meet after they leave the home (a neighbor’s house, street corner, or particular tree).

Call 911 for Help! It’s OK to scream and yell in an emergency. Find a neighbor and call 911.

Practice Your Escape Plan! Practicing how to exit your home in a fire is the BEST way to prepare.

If your child has disabilities, call your local fire department’s non-emergency number and explain your family’s situation. They can suggest escape plans, perform a home fire-safety inspection, and recommend special equipment, such as smoke alarms with flashing lights and vibrating elements to place under pillows.

More information for those with disabilities:

U.S. Fire Administration

FireSafety.gov

Great books for kids:

A Day with Firefighters

Fighting Fires

Firefighters A to Z

Fire Truck

I Want to be a Firefighter

No Dragons for Tea: Fire Safety for Kids (and Dragons) – we love!

Free coloring book download

If your child is curious about fires, the bedroom is the most common place for children to “play” with fire. If you suspect your child is experimenting, look for burnt matches or burn marks under your child’s bed, desk or in the closet, and GET EXPERT ADVICE.

Hopefully, you never need any of this information, but if you do, preparedness is key and can truly save lives.

 
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Posted by on August 23, 2011 in Parenting tips, Special Needs

 

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ID Bracelet Giveaway

CONTEST CLOSED. “Kel” (Comment #4) was the winner. Waiting for her contact information to send out her prize. Wish I had one to give to all of you! Thanks for entering.

We recently purchased a MY-MED ID bracelet for Jenna. It’s similar to the one shown above and features a USB storage device enclosed in water resistant silicone. The storage device includes already installed software that allows you to simply fill in the blanks with important information for your child. Programming the information was as easy as plugging in the USB device and filling in the blanks!

Before we ordered Jenna’s, I accidentally ordered the MY-ID bracelet (the one pictured above). It’s the same idea, but doesn’t include as many pre-programmed spaces for medical information. This is good news for you, because you get to benefit from my mistake! That’s right! I’m giving away the above pictured MY-ID bracelet to one lucky reader!

I think these bracelets are priceless for kiddos who are prone to wander, especially if they’re non-verbal. I can even see advantages for “typical” kids when visiting theme parks, festivals, malls, or other places where there might be a higher likelihood of being separated. Even though the MY-ID bracelet doesn’t include multiple spaces specifically for medical information, there’s a “Notes” section where medical conditions or medications could be included. From the MY-BANDS website:

“Each band comes with instructions for loading numerous emergency contacts onto the USB device, so emergency personnel have easy access to this critical information so they can reunite you with your child. There is also enough space to upload a current photo and scanned fingerprint.

MY-ID is unique as it holds the emergency contact information of whom to call when a child is lost, or missing, NOT the childs name and personal information.”

Jenna usually doesn’t like wearing jewelry of any kind, but this band is light and comfortable and she never complains. In fact, she loves wearing it, and frequently prompts me to remember that she needs to put it on!

To enter the giveaway, all you have to do is leave a comment! Simple as that! Make sure you include an email address so we can contact you if you win.

Contest details:

  • Only 1 entry per person
  • Winner will be selected at random using a random number generator
  • Contest ends at midnight on August 5
  • A winner will be selected and announced on August 6 during the chat/blog hop for BlogHer at Home
  • Winner will be contacted via email

For more fabulous prizes and fun over the next week, be sure to check out the BlogHer at Home website!

Disclaimer: I didn’t receive any payment or products for writing this post. The opinions expressed here are completely my own.

 

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Teaching Kids About Personal Space

Check out my review of the book Personal Space Camp at Shop Sensory today!

 

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A Labyrinth for Calming Stress Relief

Check out my post at Shop Sensory on a fun & calming activity for kiddos and adults alike!

 

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Who Am I?

Question?

I finally had a little free time today to sit down and read some blogs that I’m WAY behind on. I came across this at Caleigh’s Corner:

“Often I wonder if parents, just like myself, lose their identities in the care of their children. I’m truly different since Caleigh’s diagnosis during pregnancy, and it becomes more apparent all the time. Crowds are now difficult for me to handle. Social situations are awkward at best. My bubbly persona that once described me only peeks through every now and then. I was the girl that was always happy. Always smiling. I can still smile and laugh, but my motives are different. The results have changed. I’m definitely more cynical and snide about certain things. Where before I was naively positive. My empathy for others and their needs isn’t what it should be; isn’t what it once was. My rational is jaded. I’m not walking around crying all the time, but I definitely have a more serious nature about me now.”

And I seriously teared up. Her words mirror pretty much exactly how I feel. It’s not something that I necessarily LIKE, it’s just something that IS. The social area is where I notice the most differences. Crowds ARE difficult for me to handle now. I often feel socially awkward, and like I don’t quite fit in or know what to say. I used to love going out or hosting people. Now – not so much. I’d much rather stay home and be “hermit-y.” Maybe because I’m often tired and soul-weary. I’m not sure I feel like I’ve lost my identity, but I definitely feel like it’s shifted and I’m constantly rediscovering it. I know I would not trade a single day of my time with Jenna and I’m so very glad that I get to be home with her. I know that my perspective on many things has changed positively as a result of Jenna’s presence in my life. Are these changes I notice a result of being a special needs parent or just the natural result of motherhood? Or maybe just a part of “growing up” and the constant evolution that is life? I don’t know the answers.

What I CAN tell you, is this is why I blog. It’s why I read blogs. There are still a lot of people out there who don’t get it. Who think I’m wasting time. But, finding a connection with people/parents who are experiencing many of the same things? Finding that you’re not so alone on the journey?

That’s absolutely priceless.

 

Nutrition Information

creating a balanced meal- food group plate- healthy nutrition meal planner platephoto by nutrition education

I’ve been getting several requests for information on where to find reliable nutrition information for creating homemade blended formula for tube feedings. Below are several sources I use with a brief description of each as provided by The Oley Foundation in their monthly newsletter.

www.Nutrition.gov

The government’s nutrition website provided as a service of the National Agricultural Library of the U.S. Department of Agriculture (USDA). You can find links to USDA MyPyramid or Dietary Guidelines for Americans. The site includes a “Health Issues” page and links for shopping, cooking & meal planning.

www.hsph.harvard.edu/nutritionsource

Maintained by the Department of Nutrition at the Harvard School of Public Health and designed to help you achieve the healthiest diet possible by providing timely information on diet and nutrition. Colorful & easy to navigate.

www.eatright.org

The American Dietetic Association offers “Food & Nutrition Information You Can Trust.” Click the link “for the public” and you’ll find numerous resources and nutrition education materials. Site includes a BMI calculator and videos on a variety of food & nutrition topics.

www.nutritioncare.org

Provided by the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) Includes current news on topics related to parenteral and enteral nutrition with information for patients and caregivers.

www.clinicaltrials.gov

Registry of federally and privately supported clinical trials conducted worldwide, offered through the National Institutes of Health (NIH). There are currently around 100 studies on parenteral nutrition open to enrollment & 180 for enteral nutrition.

Additionally, one of my favorite books is Raising Vegetarian Children, which is just full of charts with nutritional requirements for children and tons of other useful information.

If you have a favorite reliable source, please share it in the comments! I always love to hear what you have to say!

 
 

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Getting Kids to Try New Foods

little kid eating a big hot dog - _MG_8863photo by Sean Dreilinger

I found this article in Kiwi magazine from Traci Paige Johnson, and I just had to share her three ideas with you! They’re fabulous! From this month’s edition:

FOOD ADVENTURER – Turn your child into a superhero (it’s better if you say FOOOOOOD ADVENTUREEEERRRR! in a superhero voice) by having her don special goggles, a cape, or whatever will lighten the mood as she takes her first bite of an unfamiliar dish. Kids are more apt to try a new food if they’re happy and relaxed.

THE REVIEWS ARE IN – Turn your dinner table into a talk show, ,with your child as the guest commentator. Hold up a pretend microphone and interview him: What does this new food look and smell like? What does it taste like? Does he give it a thumbs-up? A thumbs-down? A thumb to the side? Keep a chart with stickers to show how each new food was reviewed on each “episode” of your show.

YOUR LUCKY DAY – Bring one die to the table. Each person takes a turn rolling it: Whatever he rolls determines how many bites of the new food he has to try. Even if your child rolls a one, that’s okay: Try the food again tomorrow and hope for a six! The more times he tastes a food, the more his palate will get used to it – and start to like it.

I think Jenna would think all of these are fun, and trying all three will mix it up a little bit. I plan to start using these ideas ASAP. We’ll see how it goes. Fingers crossed!

 
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Posted by on April 19, 2011 in G-tube issues, Jenna, Special Needs, Therapy

 

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The Calming Effect of “Heavy Work” for Sensory Processing Disorder

Pull!photo by Steve Weaver

In therapist lingo, “heavy work” refers to proprioceptive input. The definition of proprioceptive is “the awareness of posture, movement, and changes in equilibrium and the knowledge of position, weight, and resistance of objects as they relate to the body.” Kids with Sensory Processing Disorder sometimes seek out proprioceptive input when they are looking for a way to calm and organize their nervous system. They may seem disruptive, full of excessive energy, or even unsafe. They might purposefully crash into things (or you), jump off of things, or seem in constant motion. Jenna seems to alternate between “sensory seeking” days and “sensory avoidant” days. When she’s sensory seeking, one of my first clues is that she purposefully bumps or crashes into me (or walls & furniture). I thought I’d share with you a list of suggested “heavy work” activities that our therapist provided to us, along with some of my own additions of what we’ve found that works.

To experience the calming effect, these activities need to be performed 5-15 minutes.  Slow, steady resistance that requires effort to be exerted against the muscles and joints is required. Avoid fast, “jerky” motions that will tend to gear up the nervous system and work against what you’re trying to accomplish. It’s important to pay attention to your child’s specific reaction. What works for one child, might not work for yours! Keep track of which activities seem to work best, as well as which activities they seem to prefer. You will generally notice an increase in eye contact as the child calms and becomes more focused.

  • Push a loaded stroller or shopping cart (we have a play stroller & shopping cart that are great for this)
  • Shovel snow (or dirt if you need a hole dug!)
  • Push a dust mop, broom or mop (Jenna LOVES the dust mop)
  • Pull a rake, wagon, loaded sled, loaded laundry basket or blanket loaded with toys
  • Carry a bag of groceries, a diaper bag, a gallon of milk, a loaded backpack, watering can, garden hose, etc.
  • Move or push furniture
  • Ride a bicycle (Jenna has a bike she rides inside)
  • Joint compressions (simply gently/firmly squeeze joints – Jenna tells us how much to squeeze) We call this “Squeezies”
  • Tug of war with a theraband, broom handle, rope, blanket, etc.
  • Rocking gently back & forth while on all fours
  • Wrap a blanket around the child and massage (we call it a burrito)
  • Hang upside down on monkey bars or over an ottoman or bed (or you can hold them if it doesn’t wreck your back!)
  • Sitting with a weighted blanket or vest
  • Lay or sit on scooter board and use hands and feet to move
  • Play catch with a weighted ball
  • Make a kiddo sandwich with child laying on their back & you pressing slowly/firmly with large cushions or pillows
  • Jumping – trampoline, jump rope, hopscotch, on a bed, into a beanbag, etc.
  • Bouncing on a therapy ball (with adult support) or this bouncing ball
  • Lizard crawl on belly and pulling self with elbows
  • Washing windows, erasing a chalkboard, paint with water on a fence, the side of a building, or the shower wall, wiping down the shower walls
  • Cooking activities like stirring, pressing, kneading, or rolling dough
  • Brush a family pet
  • Squeezing a stress ball, theraputty, or playdoh
  • Use a paper punch to make confetti
  • Sand a piece of wood
  • Play “parachute” with a large, thin blanket stretched between you – hold corners, throw blanket up & then pull it down, try running under, etc.

Whatever you choose to do, making it fun makes all the difference! Take a deep breath, smile, and be calm and patient yourself (I know it’s easier said than done sometimes!). YOUR attitude is often contagious and truly makes a difference in their ability to calm.

Om & Namaste!

 

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Side Effects of Prescriptions for Kids: A Cautionary Tale

Pills 3

photo by e-MagineArt.com

The following is a story from my own experience. Thank GOODNESS I was paying attention. I’m sharing so that you always remember to pay attention, too.

Jenna was prescribed Rynatan the other day to (hopefully) help clear up her congestion. It’s an antihistamine/decongestant that helps dry up the mucus before it settles in her lungs and leads to pneumonia. We’ve given it to her before and, last year, we started it at the first signs of congestion and avoided the hospital for the first year ever. We needed a new prescription, though, and the doctor said it was no problem. She’d phone in an order for the generic version. We’ve always gotten the generic version in the past. When I picked up the prescription, I first noticed that the name on the label was different. I double checked with the pharmacist, who confirmed, yes, it WAS the generic version of Rynatan.

Here’s the kicker. I ALMOST threw away the insert that comes with the med. We’ve used it before. No problems. Why keep the insert? But I decided that since it had a different name, I should read it and keep it while she’s taking it. I read it, it sounded the same, and I gave her the first dose. About four hours later, we were sitting on the couch reading and snuggling when I noticed her heart rate seemed fast, so I timed it. 135 beats a minute – resting. I went to the internet and look up “normal heart rate for a five year old” (with no fever) and find that 135 is INDEED high. I went back to the medication package insert and read the side effects. Among the many possibilities, it says that if you experience serious side effects LIKE RAPID HEART RATE, you should immediately call your doctor. So I did. We ended up back at the doctor’s office, where her heart rate had climbed to 155 – resting, and was accompanied with shortness of breath. Turns out, there are many generic versions of most drugs, each with different manufacturers. Each manufacturer might use different ingredients/fillers. You, or your child might react differently to one generic brand than you did to another, including a potentially serious allergic reaction. Never just assume that, because you took a drug in the past, it’s generic version or a new generic version will work the same for you. Pay attention to how you feel on any new medication, and ALWAYS keep the package insert while you’re taking it. Never hesitate to call your doctor (or pharmacist) if you have questions or concerns.

I don’t know about you, but I just assumed that “the generic version” would have the SAME ingredients and make-up as the original. We all know what Benny Hill said about assuming….. Well, at least people as old as I am who know who Benny Hill is. *wink*

Anyway, now YOU know what I know, and we’re all a little wiser.

P.S. We stopped the med for Jenna, and her heart and breathing rates were back in the normal range this morning. She’s still very sick. Her lungs sounded worse this morning and she has a fever of 100F. We’re hoping that the oral steroids and inhalers that we started last night will really kick in today and we avoid full blown pneumonia and a trip to the hospital.



 
 

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