The diet I'd like to have

I don’t know if every mom worries about how much their child eats but since the day Kaia was born I’ve been, I think you could accurately say, obsessed with how to maximize the calories that go in her body. Kids with her syndrome are usually described as “tall and thin”, but when we went to the biannual international conference for her syndrome last summer and saw some of the older kids, I wouldn’t hesitate to use the word emaciated to describe them. Feeding tubes, especially in infancy, are not uncommon. Throw in a diagnosis of dysphagia and cleft lip and palate, and it creates the perfect storm for a paranoid mother. While everyone – doctors, therapists, her nutritionist, and family members, recognizes that she is gaining weight and doing fine and concludes therefore that I’m worrying too much – I know otherwise. I know she is doing so well because of all the painstaking care I’ve gone to in making sure she gets the most bang for the buck calorie-wise. I’ve gone so far as letting breastmilk sit in the fridge for a day or two to allow the cream to rise, then skimmed the cream and added it to her other foods. I offer her at least 4 meals a day plus opportunities to nurse. If Kaia does end up needing more extreme nutritional intervention, it won’t be for a lack of my trying to avoid that. I know that a lot of you reading have kids who require tube feeds. I don’t doubt that you did everything you could to avoid that too. Sometimes no matter what you do a kid needs that extra help. I’d like to share a sampling of some of Kaia’s dietary staples, in hopes that another parent may find it helpful or even share some tips with me.

Kaia's ultra fattening (but healthy) mac-n-cheese

16 oz pasta (I use whole wheat Kroger brand salad rotini pasta)
1/2 c butter (the real stuff, unsalted)
1/3 c flour (I use whole wheat flour)
2 c whole milk
4 c shredded cheddar cheese (use the full-fat, no reduced fat here)
1 container 12 oz small curd cottage cheese 4% milkfat (the full fat stuff again)
2 lg eggs, beaten

Preheat oven to 350
Cook pasta, drain
Melt butter over low heat, whisk in flour for 1 min. Whisk in milk. Cook over med heat whisking constantly until misture is thickened and bubbly. Stir in cheese and remaining ingredients. Stir in pasta. Spoon mixture in large casserole baking dish. Bake at 350 for 30 minutes.

I double this recipe, then spoon into portions on wax paper and freeze it, then put in large gallon size ziplocs. I use two frozen chunks, mix in a vegetable like cooked chopped kale, microwave, and voila! instant lunch/dinner.

Other favorites:

Spaghetti - just whole wheat spagetti mixed with jarred spaghetti sauce and lots of whole milk ricotta cheese. She loves this stuff. It's high calorie and healthy.

I feed her half an egg yolk and about 1/8th an avocado every morning. I boil the eggs, let then cool in fridge, peel, cut in half, and freeze the egg yolks for Kaia. Paul & I eat the egg whites. Same principle for the avocado: I buy in bulk at Sam’s Club, and cut in 1/8ths when it's ripe and freeze the sections. That way it never turns brown.

Another great recipe but one that Kaia wasn’t too hot on so I’ve haven’t made it again: Cooked brown rice with coconut milk (I bought the coconut milk canned, the full fat version has 120 calories in 1/3 cup and 10 grams of fat!) and a little cinnamon and diced pineapples and oranges mixed in.

She also has liked the mini pancakes Kroger brand (they smell like chocolate chip cookies when heated) smeared with butter. I'm sure they're not ultra healthy but she has loved them in the past. Spreading almond butter on the pancakes is another great way to increase the protein and calories. I haven't introduced peanuts yet.

Grilled cheese sandwiches are super easy and relatively healthy if made with whole wheat bread. Just melt butter in pan, put in whole wheat bread slice topped with full-fat velveeta and again, instant meal! I tried regular cheese and she likes velveeta better.

Kaia does eat some of the foods we do – she’s had turkey and peas, sweet potatoes and meatballs, and fish from our dinners. I've given her other things that we eat too. I usually just try to add different types of cheeses or butter to increase the calories/fat content. Some of the morningstar farms frozen appetizers like portabello mushroom bites, or broccoli and cheddar bites are actually pretty high calorie too.

Oh, another one of her favorites in crab salad. You know, the fake crab meat stuff? I mix that with full fat cream cheese, real mayo, and real butter, and she loves it.

Kaia still has trouble with oral motor skills (chewing) so we fork mash just about everything. She can handle small pieces of banana or grilled cheese but she isn't really chewing yet - just mashing it around in her mouth. She recently started biting off crunchy bits of graham crackers so we’re hoping this means her oral motor skills are improving.

A disclaimer: we use whole wheat bread and grain products. I know some parents feed their kids a wheat-free, dairy-free diet (or gluten free, casein free, I’m not really sure what the difference is). Many of the kids with Kaia’s syndrome exhibit autistic-like traits and I know this is a popular intervention for autism. I looked into it but didn’t see any real hard data to support the drastic change that diet requires. If you know of anything different (valid scientific data supporting the diet), please let me know.

For those of you with kids who struggle to gain/maintain weight or have feeding issues, do you do anything else to encourage weight gain? Any favorite recipes or tips you’d like to share?