Family Matters
 
 
  An IRSF Family Advisory Board (FAB) Publication April 16, 2009  

FAMILY MATTERS RECIPES

We're asking you to help us gather valuable input from RettNet families on various topics with our "Family Matters" e-publication. This information will be gathered and posted on the IRSF website for future reference.

We'd like to know some of your creative time-tested ideas for meals. Do you have a favorite recipe? Or a trick to help your child eat or drink?

"Our daughter Katie has Rett Syndrome. She has had difficulty chewing solid foods ever since her regression at 14 months of age, and we've found that a pureed diet works best for her," says Paige. "She also has a real sensitivity to dairy - like rash, eczema, throwing up kind of sensitivity, not just gassiness - so adding butter, cream etc for weight gain has not been an option for her. Though she loves to eat orally, Katie also has a Mic-Key button g-tube, which we use mostly for hydration (soy milk and water) and her seizure and reflux medicines. We've perfected a dinner meal which she continues to love time and again, is nutritious, and she can eat by mouth or we can give through her g-tube on the rare occasion, like if she has a cold or illness and just can't seem to cope with a runny nose, cough, and food all at once.

Here's the recipe. We opt for organic chicken and vegetables, but this is not necessary.
  1. 1 whole roasted chicken from local market, deboned and shredded
  2. 1 bunch broccoli crowns - very well steamed
  3. 1 or 2 red bell peppers - very well steamed, skin peeled
  4. 3 large carrots - peeled and very well steamed
  5. 1 butternut squash - halved and baked to fork-through softness
  6. 1 cup olive oil (more or less depending on calorie needs - 1 Tbsp averages 125 calories)
  7. Set aside the steaming water for the blending process
    8. (optional: slice fresh ginger into your steaming water - some say it settles the stomach but it is a flavor you either like or you don't)
  8. Salt and pepper to taste
  9. Cut up all the vegetables into 1-inch size pieces. Add into a really good blender in equal parts vegetables and chicken - depending on size of blender, you may need to make multiple batches. Blend approx ¼ cup each of olive oil and the reserved steaming water at a time until you get a texture that you think is right for your child. You can also experiment with different vegetables for flavor preferences, or add some sautéed garlic or onion for a flavor boost.
  10. Keep a few meals worth of fresh puree for the next few days. Spread the rest into ice cube trays, freeze overnight, pop into a freezer safe Ziploc bag and defrost as many cubes as needed for dinner . Yes, in a pinch and short on time, I've been known to dip chips and enjoy it myself."
Please share your recipes with us, too!

Your IRSF Family Board and our friends on Rettnet would love to hear from you. Just respond to RettNet on this subject.

So, we'll look forward to hearing from you, our Rettnet experts. Please reply with your comments to: rettnet@home.ease.lsoft.com.

Kenna, Jane, Sherri, Dan and Will for the Information and Communication FAB subcommittee

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