Food Journal

Excerpt from a post I wrote on 11/7/2011:

"I've never run a marathon or relay race or have ever really done much running at all, but I think this illness can compare to that...and to a roller coaster too. There are ups and downs and when it's going good, you get some relative rest and get to enjoy a relatively normal life, but when its bad you run your ass off and take all the things that come at you one after another and just pray that you get through it all ok so you can get some time to breathe before the next round of who-knows-what comes back at you once again."

Summer was good for us.  So, so, so good.  We had been hospital-free for almost a year, Addy was growing and gaining weight, eating lots, and both girls were doing so great.  We went out a lot, had so much fun, and seemed to have this  illness under control.  I felt extra motivated to find the perfect diet and had extra time to chart it in a food journal.  And then... the leaves changed, fall came, and the shit hit the figurative fan.  Seems to happen every year since 2010, and the description I wrote above still holds very true.  Hopefully we're almost over the worst now, and hopefully we'll be getting back to the better part of the roller coaster soon.

Until then, my food journal stops at #4...

Food journal entries below-- click Read more link under Rosie's picture

 
Food Journal #4 - September 30

I have one kid who wants to eat everything but can't... and another who can eat anything but won't.  So when Rosie decided today that she wanted a bowl of carrots and a bottle of coke, I said "here you go."  Addy meanwhile was feasting on a bowl of GreeNoodle with some wild caught key west pink shrimp that I bought frozen and boiled in sea salt water.

There are several bags of Bob's Red Mill products in the pantry right now: almond flour, coconut flour, spelt flour, kamut flour, unsweetened coconut, and tapioca flour.  I'm no baker, but Addy's birthday is coming up next month, and she keeps saying "cake...yum!"  so I have to bake something that works.  I'd buy it, but even vegan bakeries use sweetener like agave nectar or honey that just won't work.  Apparently unsweetened low fat low carb no fruit protein rich pastry products are a little hard to find.  I could always stick some candles in a block of tofu... mmm appetizing.  Thinking of giving cocoa butter a try...

 

Food Journal #3 - September 19

"Feed her whatever is already on your table." -what healthcare professionals tell me when I ask what I should feed Addy.  Tried that... didn't  work too well.  Before Addy was born, we ate a lot of microwaveable convenience foods.  Why cook a pot roast when Hormel would do it for me?  Microwave for 5 minutes and we were good to go.  Even when I started to actually cook more, a lot of what was already on our table still had some form of sugar in it (marinades, spice mixtures, convenience foods), and unfortunately too much sugar (sucrose, fructose, lactose, dextrose) or sugar alcohol (sorbitol, xylitol, mannitol) = bad news for little Ad.  What kind of bad news?  Diarrhea blowouts and yeast overgrowth thanks to missing 85% of her small intestine and ileocecal valve.  Besides being a pain in the ass for me to clean up, this also deters from our goal of weight gain and maintaining adequate hydration to hopefully work towards removing her central line one day.  So we have to limit her sugars and choose wisely, and I have to be more creative at the grocery store and cook more things from scratch.  It has worked out for the family-- our meals are simpler, fresher, and taste better too.  For example, I fixed boneless country style ribs the other night... before I would've just doused it in barbeque sauce... instead I tossed with red & green peppers, pearl onions, sea salt, cracked pepper, and a good dose of extra virgin olive oil and then slow roasted for a few hours till meltaway perfection.  It was good.  But we have busy days where we're on the go or she demands food without the patience to wait for me to cook it, so we've had to find some quick and easy convenient alternatives to stock on our shelves.
Here are some:

-Tonnino Tuna (yellowfin tuna packed in olive oil)

 -GreeNoodle (plain, non fried, and made with moroheiya)

-Nishimoto Bonito Flakes (we toast these quickly in a pan with olive oil and a little splash of soy sauce)

-Kamut Puffs (Addy's nutty alternative to Rosie's sugarlicious Gerber puffs)

-and not pictured, Eggo Homestyle Waffles (...these have some sugar, but only 2 grams per 2 waffles and she refuses to eat the blander alternatives, so I had to choose my battles and let her win this one.)

Food Journal #2 - August 26

Food Journal Entry #2 - After several failed attempts to feed Addy beef (cheeseburgers, slow cooked shank shredded then crisped up with lemon and onions, meatballs-- all which she loved but didn't tolerate well), I figured out that she does much better with chicken and fish.  So I took the girls to our favorite grocery market on Friday.  It has an impressive seafood section that practically rivals a small aquarium, with multiple live tanks of different shellfish and tons of fresh fish beautifully arranged on open deep ice displays, some whole and bigger than Rosie.  Picked up two packs of fresh filets - rock fish for $3.00 and dover sole for $3.60, what a deal.  Cooked them at home for Friday dinner (rock fish) and Saturday lunch (dover sole) sauteed in olive oil with lemon, garlic, sea salt, and cracked black pepper then finished with some butter - served over rice for Anthony - with some garlic noodles for Addy - and not at all for Rosie, who declared fish to be "very stinky" (just like she sometimes says that beef is "very dirty", not because it is, but just because she's two...) and ate just noodles and rice instead.  Success :)

Food Journal #1 - August 26

It's a frustrating, ever-changing challenge trying to figure out what to feed your kid when they have a digestive disease... made even more challenging by the fact that Miss Adelaide just so happens to be a demanding food-loving little diva with an epicurean appetite who has a whole lot of trouble accepting her limitations and refuses to take "no" for an answer.  I'm always trying to find the right balance for her diet, but unfortunately, what works well one week can be disastrous the next... and just when you think you've found a great solution, everything changes again. You just have to keep your goals in mind and roll with it. 

Here are my goals for little Ad:

1) gain weight (her, not me...)

2) avoid diarrhea 

3) avoid constipation 

4) avoid small intestine bacterial/yeast overgrowth 

5) make the food taste good so that Little Miss Foodie is happy and satisfied 

AND...

6) accomplish all of the above with no fruit (except lemon) - no sugar or sugar alcohols - limited fiber - limited vegetables - limited dairy - limited carbs/starches - no beef - limited fat.

And hopefully accomplish all of the above without the need for antibiotics or motility-regulating medications.  I'm testing out some guidelines from the specific carbohydrate and paleo diets in moderation and choosing from the limited categories more wisely (for her, anyway... I'm still sneaking cookies when she's not looking).  So far it's working.   I will journal it here.