Let's face it - even for very typical kids, parents put in a lot of work keeping them fed. In the beginning, it's breast or bottle (or both) and all the time and equipment and hassle either way...but by 2 or 3 most kids are pretty good about feeding themselves. Even so, there's still the preparation of food, the buying food or growing food, the trying to find things your kids will eat on their picky days (and we all have those phases and things we like and don't like).
Leaf will be 2 in less than a week. Breakfast this morning was a mashed banana in yogurt...and it took over an hour, 3 bibs, and 3 HMEs (a little barrel that goes over the trach and keeps moisture in - it's an artificial nose of sorts) to get through the meal.
Off and on, Acorn decides that instead of food, he'd prefer a carton of his high calorie formula. It's supposed to only be a supplement, and he gets one every morning for sure, but as short as he usually is on calories, it's not like we can say no. As it is, his diet is pretty limited - he rarely eats meats, and mostly sticks to carbs and veggies.
We hear from people every once in a while that kids won't starve themselves - that eventually they'll eat. Clearly those people have never met kids like mine, or kids who can't eat orally.
Showing posts with label food. Show all posts
Showing posts with label food. Show all posts
Monday, May 20, 2013
Monday, April 29, 2013
Lunch For Acorn
I'm still a little shocked that Acorn will be going to kindergarten in the fall.
One of our big concerns is lunch - he's picky, and it's an all day kindergarten program, so we'll have to work something out, lunch wise. Though the staff at his new school are quick to assure us that many kindergarteners can't figure out their lunchboxes the first month or so, Acorn's fine motor skills are a little behind, and that makes it an even bigger challenge for him.
One of our big concerns is lunch - he's picky, and it's an all day kindergarten program, so we'll have to work something out, lunch wise. Though the staff at his new school are quick to assure us that many kindergarteners can't figure out their lunchboxes the first month or so, Acorn's fine motor skills are a little behind, and that makes it an even bigger challenge for him.
One tool in our tool box is the PlanetBox lunch boxes I bought last year. Unlike many other lunchboxes in my stash, Acorn can open these on his own.
 |
| My lunch earlier this week - sandwich, salad, cookies |
Being able to open his lunch box all by himself will be a huge step towards independence.
Monday, April 8, 2013
Hospital Food
Hospital food is a mixed blessing - on one hand, it's generally available much of the day, and in many hospitals now, it's available for delivery right to your child's room.
On the other hand.....it's expensive, and of mixed quality.
When Acorn and Leaf had RSV earlier this year, we were trading off who was at the hospital and who was elsewhere; the person coming in to switch shifts brought in food. K brought us dinner a couple nights too. We had a similar pattern in the fall of 2011 when both were hospitalized, just before Leaf got her trach, and the weekends we stayed at the bigger hospital with her, we brought in food in much the same way. This winter's stay made me think, "you know, we ought to write up a plan for what we're going to do about food when we're stuck here so that we can just tell someone to go shopping or go raid our pantry, and bring back X, Y, and Z."
When Acorn had his tonsils out, we almost ended up spending the night. The doctor wanted us to stay longer and make sure he was going to drink well enough; the nurses were panicky about his sats dropping very low and the amount of oxygen he needed to come back up to normal. In the end, we went home on oxygen, because the doctor knew us well enough to know we would be fine at home, but that was long after we'd bought lunch and eaten in the recovery room waiting for transport to the floor, and not before we'd started making plans for someone to go retrieve dinner.
So, that had me thinking again about what an emergency food run would look like for a hospital stay, and I figured I'd share with you all.
First, of the three hospitals we have doctors at, we only will allow for inpatient stays at two of them. Of those two, all but a few areas have a bedside cube fridge. They do not have vending machines in easy reach of the rooms - one has them on the same floor but out in the lobby, and the other has them on some floors out in the entry, but not on all. Too far to walk unless a child is napping (and for us to be inpatient usually involves a child who's not well enough to wander the halls without a mask, and of course mine won't wear masks).
Both hospitals have microwaves available on the floor. And silverware and plates, if need be, though I think it may be worth setting up a stash of plates and plastic ware here at the house for someone to grab. They also have cups, straws, and ice readily available. Both have coffee and milk easily available too.
Acorn is pretty picky when it comes to eating, so if he's inpatient, we've found that it's worth packing in some things he will eat - multigrain or honey nut cheerios for example. His Boost is another good choice - he'll drink it under almost any circumstances, and at 360 calories and 1/4 of his daily vitamin and mineral needs per juice box, it's a reasonable substitute for food when he's not interested in eating.
Leaf subsists mostly on purees and formula. We know the closer hospital doesn't carry her formula, so we need to pack that if she's inpatient.
That leaves food for us adults.
For breakfast, something easy, like muffins or bagels is probably the best choice. They store and transport well, and we can eat them whenever we're up.
For everything else, our best so far has been sandwiches. A loaf of bread, some cheese, and some lunchmeat will last a fair number of meals. Chips of some sort, individual sized fruit cups, and some soda make the second most useful batch of foodstuffs.
For slightly longer stays, prewashed lettuce, tomatoes (and a good knife), croutons and salad dressing, grapes, and other snackable foods make a good addition. Lettuce and tomatoes can go on sandwiches or become salads. Fresh fruits and nuts make good snacks too.
And in the end, we can eat fairly healthy all from the confines of a hospital room, without breaking the bank.
On the other hand.....it's expensive, and of mixed quality.
When Acorn and Leaf had RSV earlier this year, we were trading off who was at the hospital and who was elsewhere; the person coming in to switch shifts brought in food. K brought us dinner a couple nights too. We had a similar pattern in the fall of 2011 when both were hospitalized, just before Leaf got her trach, and the weekends we stayed at the bigger hospital with her, we brought in food in much the same way. This winter's stay made me think, "you know, we ought to write up a plan for what we're going to do about food when we're stuck here so that we can just tell someone to go shopping or go raid our pantry, and bring back X, Y, and Z."
When Acorn had his tonsils out, we almost ended up spending the night. The doctor wanted us to stay longer and make sure he was going to drink well enough; the nurses were panicky about his sats dropping very low and the amount of oxygen he needed to come back up to normal. In the end, we went home on oxygen, because the doctor knew us well enough to know we would be fine at home, but that was long after we'd bought lunch and eaten in the recovery room waiting for transport to the floor, and not before we'd started making plans for someone to go retrieve dinner.
So, that had me thinking again about what an emergency food run would look like for a hospital stay, and I figured I'd share with you all.
First, of the three hospitals we have doctors at, we only will allow for inpatient stays at two of them. Of those two, all but a few areas have a bedside cube fridge. They do not have vending machines in easy reach of the rooms - one has them on the same floor but out in the lobby, and the other has them on some floors out in the entry, but not on all. Too far to walk unless a child is napping (and for us to be inpatient usually involves a child who's not well enough to wander the halls without a mask, and of course mine won't wear masks).
Both hospitals have microwaves available on the floor. And silverware and plates, if need be, though I think it may be worth setting up a stash of plates and plastic ware here at the house for someone to grab. They also have cups, straws, and ice readily available. Both have coffee and milk easily available too.
Acorn is pretty picky when it comes to eating, so if he's inpatient, we've found that it's worth packing in some things he will eat - multigrain or honey nut cheerios for example. His Boost is another good choice - he'll drink it under almost any circumstances, and at 360 calories and 1/4 of his daily vitamin and mineral needs per juice box, it's a reasonable substitute for food when he's not interested in eating.
Leaf subsists mostly on purees and formula. We know the closer hospital doesn't carry her formula, so we need to pack that if she's inpatient.
That leaves food for us adults.
For breakfast, something easy, like muffins or bagels is probably the best choice. They store and transport well, and we can eat them whenever we're up.
For everything else, our best so far has been sandwiches. A loaf of bread, some cheese, and some lunchmeat will last a fair number of meals. Chips of some sort, individual sized fruit cups, and some soda make the second most useful batch of foodstuffs.
For slightly longer stays, prewashed lettuce, tomatoes (and a good knife), croutons and salad dressing, grapes, and other snackable foods make a good addition. Lettuce and tomatoes can go on sandwiches or become salads. Fresh fruits and nuts make good snacks too.
And in the end, we can eat fairly healthy all from the confines of a hospital room, without breaking the bank.
Monday, April 1, 2013
Stuff in a Pot
Repost #5 - last one!
*****
Of course, I don't actually have a "right" pot for this - my bigger stockpot is about 4 times the size of this one. I used to have a perfect pot, but it scorched, and now burns anything tomato based, and rather than risk people ruining dinner again, I retired it. It's ok, it cooks down as the leafy things cook.
There is a lot in tonight's dinner that I never ate as a kid - that we would never have been allowed to even buy or cook when I was growing up, because my dad is a very picky eater - he makes my kids look like great eaters :)
This has been my go-to for using up veggies before they went bad, but now that we're not getting a big box every week, I had to buy stuff specifically for this.
"Stuff in a Pot"
1 (or more) packages of smoked sausage. I like kielbasa for this.
Lots of random veggies
garlic - we have a jar of minced garlic, so for this pot I used a big spoonful, probably 1/4 cup. Use less if you don't like garlic, or more if you're making a bigger pot
pepper (1 T or more if you make a bigger pot)
basil (1 T or more if you make a bigger pot)
Tonight, we have a bundle of Swiss chard, a leek, most of an onion, most of a bell pepper, a half dozen small redskin potatoes, the leftovers of a bag of shredded cabbage, and 3 carrots. We've used eggplant, apples, grean beans, peapods, broccoli, cauliflower, squash, sweet potatoes, and probably some other things before too.
Chop into bite sized pieces, and cook for 30-60 minutes until everything seems cooked. Serve with warm crusty bread or garlic bread.
*****
Ever have one of those moments when you realize you picked the wrong pot?
Of course, I don't actually have a "right" pot for this - my bigger stockpot is about 4 times the size of this one. I used to have a perfect pot, but it scorched, and now burns anything tomato based, and rather than risk people ruining dinner again, I retired it. It's ok, it cooks down as the leafy things cook.
There is a lot in tonight's dinner that I never ate as a kid - that we would never have been allowed to even buy or cook when I was growing up, because my dad is a very picky eater - he makes my kids look like great eaters :)
This has been my go-to for using up veggies before they went bad, but now that we're not getting a big box every week, I had to buy stuff specifically for this.
"Stuff in a Pot"
1 (or more) packages of smoked sausage. I like kielbasa for this.
Lots of random veggies
garlic - we have a jar of minced garlic, so for this pot I used a big spoonful, probably 1/4 cup. Use less if you don't like garlic, or more if you're making a bigger pot
pepper (1 T or more if you make a bigger pot)
basil (1 T or more if you make a bigger pot)
Tonight, we have a bundle of Swiss chard, a leek, most of an onion, most of a bell pepper, a half dozen small redskin potatoes, the leftovers of a bag of shredded cabbage, and 3 carrots. We've used eggplant, apples, grean beans, peapods, broccoli, cauliflower, squash, sweet potatoes, and probably some other things before too.
Chop into bite sized pieces, and cook for 30-60 minutes until everything seems cooked. Serve with warm crusty bread or garlic bread.
Monday, March 25, 2013
Meal Planning
Repost #4
*****
For the last couple of years, we've had random boxes of fruits and veggies - first, a summer with a CSA, and then a local company that delivered a box of stuff to the door every week.
It was a beautiful thing - cut my shopping time dramatically, mostly saved us money (the CSA not so much, but the service had great prices and we split our box with a friend), and it encouraged eating things that weren't typical staples around here.
Unfortunately, the delivery service is going out of business, which means that I have to figure out what to buy again, and buy the things we're going to eat for the week, rather than planning what to eat based on what shows up on the doorstep.
Which, given my limited shopping availability, means I really need to plan things out ahead of time.
And that's not a bad thing - we're debating kindergarten or a young 5's program for my son next year, and kindergarten here is an all day event. Since he is a really picky eater, I'll be packing his lunches daily I suspect, so getting on the planning bandwagon now is good practice.
One of our plans last year was a bigger freezer. It didn't happen (too much to do, not enough time), but it will have to be done soon to make this manageable in any reasonable sense.
So...every weekend I'll be writing up our meal plan for the week. I'm subscribed to a meal planning service, 5 Dinners in 1 Hour, and I'm going to be looking at how to use her system, which is sort of a once-a-week prep setup. I got the "clean eating" version, which is ideal for us, but not everything on her meal plans each week is something we'll eat, so I'm thinking I'll take some meals from a couple different weeks. Also, she depends a lot on frozen veggies, and that's going to be a hard switch for us, given our history recently of eating almost exclusively fresh veggies (not all - we got overloaded on corn on the cob, so we threw those in the freezer, and can now have lovely roasted corn year round).
So...here's to a new future of better planning (I hope).
*****
Required disclaimer: affiliate links above; I make a small amount of money if you buy using those links. Thanks!
*****
For the last couple of years, we've had random boxes of fruits and veggies - first, a summer with a CSA, and then a local company that delivered a box of stuff to the door every week.
It was a beautiful thing - cut my shopping time dramatically, mostly saved us money (the CSA not so much, but the service had great prices and we split our box with a friend), and it encouraged eating things that weren't typical staples around here.
Unfortunately, the delivery service is going out of business, which means that I have to figure out what to buy again, and buy the things we're going to eat for the week, rather than planning what to eat based on what shows up on the doorstep.
Which, given my limited shopping availability, means I really need to plan things out ahead of time.
And that's not a bad thing - we're debating kindergarten or a young 5's program for my son next year, and kindergarten here is an all day event. Since he is a really picky eater, I'll be packing his lunches daily I suspect, so getting on the planning bandwagon now is good practice.
One of our plans last year was a bigger freezer. It didn't happen (too much to do, not enough time), but it will have to be done soon to make this manageable in any reasonable sense.
So...every weekend I'll be writing up our meal plan for the week. I'm subscribed to a meal planning service, 5 Dinners in 1 Hour, and I'm going to be looking at how to use her system, which is sort of a once-a-week prep setup. I got the "clean eating" version, which is ideal for us, but not everything on her meal plans each week is something we'll eat, so I'm thinking I'll take some meals from a couple different weeks. Also, she depends a lot on frozen veggies, and that's going to be a hard switch for us, given our history recently of eating almost exclusively fresh veggies (not all - we got overloaded on corn on the cob, so we threw those in the freezer, and can now have lovely roasted corn year round).
So...here's to a new future of better planning (I hope).
*****
Required disclaimer: affiliate links above; I make a small amount of money if you buy using those links. Thanks!
Monday, March 18, 2013
Birthday Cake
Repost #3
Interesting fact: neither of my kids has ever actually eaten birthday cake, though they've tasted it.
******
This weekend was my birthday, and I like red velvet cake.
Interesting fact: neither of my kids has ever actually eaten birthday cake, though they've tasted it.
******
This weekend was my birthday, and I like red velvet cake.
But I'm also terribly picky about cakes and frostings, so I'm making my own cake, using a fairly old recipe that my grandmother gave me. This is the kind of thing that bugs my in-laws, because you're not supposed to cook for yourself, but I find I'm more satisfied if I do, so it's just better this way.
Besides....I mean, really, what kind of cake has vinegar in it? But this is tasty.
This is, however, the kind of recipe that makes me wish I'd taken an apron when I moved out of my parents' house. Or that I'd gotten around to buying myself one in the 18 years since I left...
I assume she got this recipe from somewhere, but the card in her recipe box yielded no clues.
Red Velvet Cake
1 tsp white vinegar
1 tsp baking soda
1/2 cup shortening
1 1/2 cup sugar
2 eggs
2 oz red food coloring
2 tsp cocoa powder (not hot chocolate powder)
1 tsp vanilla
1 tsp salt
1 cup buttermilk
2 1/4 cup flour
Heat oven to 350. Traditionally, this is made as a layer cake, so grease and flour 2 round cake pans, or one 9x13 pan.
Mix vinegar and baking soda in a small cup and set aside.
Cream shortening and sugar. Add eggs.
Make a paste of cocoa and 1 oz of food coloring (this is a really messy step; I never do it). Add to creamed mixture. Add remaining food coloring to mixture and mix.
Add vanilla and salt.
Add buttermilk and flour a little at a time, alternating. Mix well.
Pour into pan(s) and bake 30 minutes. Be really watchful - this dries out quickly if you over bake.
The traditional frosting for this cake is listed below - usually, you split each of those round cakes into 2 layers, so you get 4 layers. The frosting recipe is designed for that number of layers, so I'm including alternate measurements to make a smaller amount more appropriate for 2 layers if you're so inclined.
For what it's worth, I'm not a fan of this and usually use decorator icing or a can of plain vanilla frosting.
1 1/2 cup milk (1 cup)
1/2 cup flour (1/3 cup)
1 1/2 cup sugar (1 cup)
1 1/2 cup margarine (or shortening or butter) (1 cup)
1 tablespoon vanilla (1 1/2 teaspoons)
Mix milk and flour in saucepan. cook and stir over medium heat until thick. Cool completely (this is important).
Cream sugar, margarine, and vanilla. When fluffy add room temperature cooked milk mix slowly, beating as you go. Beat until fully incorporated and fluffy.
And there you have it. Bright red, not too sweet, and just the right texture.
Monday, March 11, 2013
I don't like quiche
Repost #2
*****
It started out as quiche lorraine, but QL doesn't have garlic. Or cheddar. Or parmesan. Or nearly as much bacon as I added, because this was a, "huh. I have leftover bacon. That's unheard of..." kind of a meal. And really, cooking didn't go too badly, once my spouse realized that keeping an eye on the kids was a full contact sport.
I've gotten good at handling grandma's pie crust recipe, and had quite a bit of dough left over, so I made this turnover type thing, stuffed with cherry preserves. Of course, the cherries bubbled out all over the pan, which will be a huge pain to clean....but that's why I have a housekeeper, because we can't keep up with the dishes as it is. (Elaine, if you're reading this, we love you, and we love having you back!)
Tonight's dinner was a tossed salad (leaf lettuce, spinach, tomato, cheese, croutons, pecans, plus a few cucumber slices for the husband - I think cukes are just gross) and quiche.
It started out as quiche lorraine, but QL doesn't have garlic. Or cheddar. Or parmesan. Or nearly as much bacon as I added, because this was a, "huh. I have leftover bacon. That's unheard of..." kind of a meal. And really, cooking didn't go too badly, once my spouse realized that keeping an eye on the kids was a full contact sport.
I've gotten good at handling grandma's pie crust recipe, and had quite a bit of dough left over, so I made this turnover type thing, stuffed with cherry preserves. Of course, the cherries bubbled out all over the pan, which will be a huge pain to clean....but that's why I have a housekeeper, because we can't keep up with the dishes as it is. (Elaine, if you're reading this, we love you, and we love having you back!)
It turns out that I forgot that I don't really like quiche. Every time I make it I think, "with that list of ingredients it has to be tasty" and then I'm disappointed. Oh well. The husband can have it for his lunch this week.
Meanwhile, I took the other half of the onion that went into the quiche (it was a *big* onion), and put that and some chicken breasts and about 4 heads of garlic (3 fresh that needed to be used up, peeled and sliced, and some pre-chopped-ina-jar) in the crock pot for tomorrow. Tonight I'll chop some root veggies, and tomorrow during my 40 minutes for lunch between appointments I'll throw them in the crockpot with the garlic chicken so that dinner will be ready when we get back from speech therapy. Multi-tasking is a wonderful thing.
Monday, March 4, 2013
Food and the Medically Complex Child
Many of us with complicated kids spend an awful lot of time trying to figure out how to feed them. For a while I thought I was going to do a separate blog just about food and a family with complicated kids. But it occurred to me that that was a silly idea all around - I might as well put it all right here.
So...I have 5 posts from that little attempt to re-post, and will then be trying to post at least a couple posts a month about feeding this family amidst all our issues, and I'll also be trying to post a little about kitchen witchery while I'm at it.
Repost #1 is below
*****
As I've mentioned, my kids have food issues.
My daughter, Leaf, who is a year and a half old, largely eats pureed foods - crunchy things have taken months of therapy, and we haven't even begun things that don't dissolve when you drool on them enough. She also has a feeding tube, and it's still a significant source of calories most days.
My son, Acorn, (age 4 1/2) used to have a feeding tube, and is not fond of pureed foods. He eats some fruits and veggies, flat breads, mac and cheese (but only Kraft and similar types), and a handful of other things. Apparently he eats better at daycare than at home, but we have to plan for what he will eat with every meal we make. We offer some of what we're eating most nights, but he's far more likely to ignore it than to eat it.
Needless to say, finding something everyone will eat is nearly impossible.
Because of my kids' medical issues, they are eligible for medicaid....which makes them eligible for WIC until age 5. WIC only offers baby foods up to a year old, because after that they should be eating table food. Needless to say, neither of my kids met that mark. WIC was a huge help last year when I took a leave of absence from work to handle some of their medical issues, and learning to cook around the offerings of WIC has been an interesting challenge. Plus, WIC pays for the outrageously expensive prescription formulas that we use to supplement both children's diets, and without that alone, we'd go broke.
We stocked up on jars of baby food when we could get them through WIC, but we've now run through the stock, so we need to blend our own, or buy more (and since we've had an abundance of fresh fruits and veggies, blending our own makes far more sense.
Additionally, I need to thank Vitamix - they have a wonderful program that gives a discount to families doing a blenderized diet. For those not familiar with the term, it means blending table food to feed via a feeding tube. We got a substantial discount off the retail price of a blender - and then about the time we got started blending things for her tube, little miss decided eating was far more entertaining. So we haven't blenderized as much as expected for her tube feedings, but we are blending things for her to eat by mouth....and this puppy makes the smoothest baby food ever, far nicer than my hand crank food mill.
Ours is one of these:
I'm trying, every few days, to make something different. This way she gets a variety of foods, and if I make 4-6 servings of 3 things a week, I'll stay ahead of her (and if not, I'll have a crazy cooking fest on a weekend). Plus she eats yogurt (mostly home made, from whole milk) and avocado, which are high in calories and make a good base for the rest of her meals.
This past week, I made a sweet potato, pears, and squash. Before that, I took home made applesauce, cooked a few blueberries, added it all together, and threw it in the blender.
My next challenge: meat. Because protein is important for growing children, and she's not going to get enough from other sources at the rate we're going.
....which makes me wonder whether my son would eat beans if they were cooked with some spices. Not my thing, but he's weird in his own ways.
*****
Disclaimer: Affiliate link, if you buy using it, I make some cash.
So...I have 5 posts from that little attempt to re-post, and will then be trying to post at least a couple posts a month about feeding this family amidst all our issues, and I'll also be trying to post a little about kitchen witchery while I'm at it.
Repost #1 is below
*****
As I've mentioned, my kids have food issues.
My daughter, Leaf, who is a year and a half old, largely eats pureed foods - crunchy things have taken months of therapy, and we haven't even begun things that don't dissolve when you drool on them enough. She also has a feeding tube, and it's still a significant source of calories most days.
My son, Acorn, (age 4 1/2) used to have a feeding tube, and is not fond of pureed foods. He eats some fruits and veggies, flat breads, mac and cheese (but only Kraft and similar types), and a handful of other things. Apparently he eats better at daycare than at home, but we have to plan for what he will eat with every meal we make. We offer some of what we're eating most nights, but he's far more likely to ignore it than to eat it.
Needless to say, finding something everyone will eat is nearly impossible.
Because of my kids' medical issues, they are eligible for medicaid....which makes them eligible for WIC until age 5. WIC only offers baby foods up to a year old, because after that they should be eating table food. Needless to say, neither of my kids met that mark. WIC was a huge help last year when I took a leave of absence from work to handle some of their medical issues, and learning to cook around the offerings of WIC has been an interesting challenge. Plus, WIC pays for the outrageously expensive prescription formulas that we use to supplement both children's diets, and without that alone, we'd go broke.
We stocked up on jars of baby food when we could get them through WIC, but we've now run through the stock, so we need to blend our own, or buy more (and since we've had an abundance of fresh fruits and veggies, blending our own makes far more sense.
Additionally, I need to thank Vitamix - they have a wonderful program that gives a discount to families doing a blenderized diet. For those not familiar with the term, it means blending table food to feed via a feeding tube. We got a substantial discount off the retail price of a blender - and then about the time we got started blending things for her tube, little miss decided eating was far more entertaining. So we haven't blenderized as much as expected for her tube feedings, but we are blending things for her to eat by mouth....and this puppy makes the smoothest baby food ever, far nicer than my hand crank food mill.
Ours is one of these:
I'm trying, every few days, to make something different. This way she gets a variety of foods, and if I make 4-6 servings of 3 things a week, I'll stay ahead of her (and if not, I'll have a crazy cooking fest on a weekend). Plus she eats yogurt (mostly home made, from whole milk) and avocado, which are high in calories and make a good base for the rest of her meals.
This past week, I made a sweet potato, pears, and squash. Before that, I took home made applesauce, cooked a few blueberries, added it all together, and threw it in the blender.
My next challenge: meat. Because protein is important for growing children, and she's not going to get enough from other sources at the rate we're going.
....which makes me wonder whether my son would eat beans if they were cooked with some spices. Not my thing, but he's weird in his own ways.
*****
Disclaimer: Affiliate link, if you buy using it, I make some cash.
Monday, June 25, 2012
Eating Better When You're Busy
In case you hadn't noticed, we've been really busy the last year or so - basically living in survival mode. Survival mode is that point where every bit of energy you have is directed towards getting through "right now" and the demands that life throws at you on a daily basis. It seems to be pretty common among special needs families, because the needs of our children are often so intense that there simply isn't time for anything else.
We're working on digging ourselves out of that mode, though to be fair, we're not sure how far out we will get - there is a lot to do every day, and just when we think we're getting things under control, something new pops up.
One aspect that we're working on first is eating. When you're in survival mode, eating out becomes common....because cooking would require time you don't have, or would require washing the dishes to have clean dishes to eat on, or because it's been a day of rushing from appointment to appointment and you realize at 2 in the afternoon that you haven't had breakfast yet (usually because what should have been a 30 minute appointment first thing in the morning with a doctor was 3 hours in the waiting room, 30 minutes trying to give a case history to a resident, and then having said doctor come in for 30 seconds, then waiting a half hour for a nurse to come do something, then another half hour for the doctor to come back again). Eating random food from vending machines is generally a fact of life for hospital stays - cafeterias there are not always open at convenient times, or they're a long walk and your child won't let you out of their sight long enough to get there (and in many places, parents can't get room service).
So yeah. Food.
Let me start by saying we're generally unapologetic meat eaters here. I need a certain amount of protein each day to really be at my best, and I'm a somewhat picky eater - I don't generally eat beans, legumes, or tofu. Acorn is pretty picky too (and protein is his weak spot), so we offer anything and everything to him (even things I can't stand) - at this point, taking whole categories of food off the table is not in his best interest.
I mentioned a while back that one of our goals is to eat more "real" food - namely less fast food, because we've already banished most boxed foods from our kitchen, along with all but a small handful of sources of HFCS. The question, then, is how to do that when you're already super busy.
Around here, a big part of it is turning out to be bulk cooking and freezing.
Breakfasts are one of our most difficult meals. Lunches can always be leftovers from another meal, but breakfast here is frequently on the road (we multitask a lot, and we have 20-60 minute drives to and from work). This weekend, banana bread and single serving "breakfast bake" was on the cooking menu:
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Ingredients:
- Potatoes (probably 2 small-medium ones; if you shred too many potatoes, throw the rest in the freezer, or use frozen potato shreds meant for hashbrowns)
- Sausage (I used 3 leftover bratwursts - you could use just about any sort of breakfast type meat here, or a meat-substitute)
- Eggs. (I used 8 eggs for these 12 cups)
- Shredded cheese (I used cheddar; about a half cup total)
- Butter, salt, pepper
While that's baking, slice your sausage, and whisk your eggs. Add salt and pepper to the eggs to taste.
Remove the potatoes from the oven. Layer sausage into each cup (these triangle ones hold about 3 slices of sausage each). Pour eggs over the top of each cup, but do not fill more than about 2/3 full, because the eggs will puff. Top with some cheese - again, to your taste, but about a tablespoon each. Put them back in the oven for 20 minutes.
We let everything cool on the counter, then put some in the fridge for near term use, and some in the freezer for use later in the week or sometime the week after that.
To serve, put in the microwave for a bit, and then remove from the silicone cup and eat. We usually pack one of these with something more starchy (like a slice of banana bread), because they're pretty protein heavy.
All in all, there was about 2 hours of work today for these 12 servings plus 2 loaves of banana bread; that's 2 weeks of breakfasts, used up leftovers and things we have on hand all the time, and has got to be better for us than stopping for breakfast at McDonalds.
Tuesday, June 5, 2012
Adventures in Food
Acorn is certainly not a typical kid when it comes to eating by any stretch of the imagination. We are feeding tube free....but we also still feed him a high-calorie prescription formula to supplement what he eats to get enough calories. He doesn't eat candy. He eats raw tomatoes and cucumbers. He eats onions (raw, sauteed, or deep fried). He eats steamed or lightly cooked carrots and bell peppers. He eats soft breads, tortillas, and most flat breads. He eats mac & cheese. At daycare, he eats grilled cheese sandwiches and blackberries, and sometimes mostacholi.We're hoping he'll try cake this year for his birthday, but not holding our breath - it'll have to be without frosting, and I'll make cake to get a texture he's more likely to handle than the typical store-bought cake.
However, life goes on and the rest of us still need to eat a more well-rounded diet. We're talking about making some major changes here, beyond our already mostly box-free pantry (namely, we're looking at getting a much larger freezer, and cooking more "quick" things and freezing them, along with more prep work up front, to try to cut out the majority of the nights we eat out).
We already get a box of fruits and veggies delivered every week. We love the company that does it, largely because of how much shopping time it saves us - in fact, we were in one of their videos a while back. We do supplement this from time to time, depending on our interests and what's been in the box the last few weeks, but with this box, we eat very little canned or frozen produce, unless we've canned or frozen it ourselves. I like eating real food - ingredients I can pronounce.
As I mentioned recently, one of our new things is to have fresh sprouts on hand.
So far we've done alfalfa and red clover, and today we started lentils. I've been less than thrilled with the red clover - it didn't all sprout at the same time, so we had some with green leaves, and some that had just barely sprouted and some that hadn't sprouted at all. The alfalfa completely filled the jar, as you can see in the center photo above.
There are 24 bags, 4 oz each, for us to work our way through in the course of sampling. At a teaspoon every 4-8 days, it's going to take us a loooong time to get through them all once, much less emptying every bag.
More recipes and food thoughts to come over the coming weeks....
However, life goes on and the rest of us still need to eat a more well-rounded diet. We're talking about making some major changes here, beyond our already mostly box-free pantry (namely, we're looking at getting a much larger freezer, and cooking more "quick" things and freezing them, along with more prep work up front, to try to cut out the majority of the nights we eat out).
We already get a box of fruits and veggies delivered every week. We love the company that does it, largely because of how much shopping time it saves us - in fact, we were in one of their videos a while back. We do supplement this from time to time, depending on our interests and what's been in the box the last few weeks, but with this box, we eat very little canned or frozen produce, unless we've canned or frozen it ourselves. I like eating real food - ingredients I can pronounce.
As I mentioned recently, one of our new things is to have fresh sprouts on hand.
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| The creepy look of just sprouting alfalfa |
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| A jar full of alfalfa sprouts |
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| French Lentils, Just getting started |
There are 24 bags, 4 oz each, for us to work our way through in the course of sampling. At a teaspoon every 4-8 days, it's going to take us a loooong time to get through them all once, much less emptying every bag.
More recipes and food thoughts to come over the coming weeks....
Monday, May 21, 2012
a new food adventure
I've tried gardening before, here in Michigan, and been largely unsuccessful. It's so unlike the part of Missouri I grew up in, weather wise, and we just don't have time to make it work well.
That said, we did grow some sprouts as a part of Acorn's SpiralScouts nutrition badge a while back, and we decided that adding sprouts to our diet regularly might be a nice thing. Sure, we get fresh fruits & veggies every week, but I hate buying sprouts because we can't use up a whole container before they go bad. Doing it ourselves means being able to make smaller batches more frequently.
So, I ordered a big assortment of different types of sprouting seeds, and we're going to try them all & decide what we like best.
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Sunday, April 8, 2012
Feeding tube bling
We've been around the block on the whole feeding tube thing, so it's both easier and harder this time around. This time we're being a little more invested in making this as stress-free a situation as possible, because the truth is that like the vent and the trach, we don't know how long we'll be needing this feeding tube.
We've managed to get Leaf transitioned back from all of her feeds being via j-tube (straight into the intestines, bypassing the stomach) to being via g-tube (straight into the stomach). We're not vomit free, mind you, but close enough that we're willing to live with it as-is. I need to contact the vent clinic team to talk about how long we need to go like this before we can have her g-j button switched back to a g-tube button. Personally, I suspect that would help us some anyway, as there will not be a tube from her stomach to her intestine that way, and the button itself will be smaller, and easier to get it good and snug so it's not wobbling in her stomach and causing more vomiting.
For Acorn, we used Button Buddies for a long time - until his tube was the wrong size and started leaking. For Leaf, this week in the mail I got some similar button wraps, and a feeding tube belt from Belly Buttons - these are super soft fleece on the back and cute butterflies on the front, and we're hopeful that Leaf's super sensitive skin will like these better than the gauze we've been using, and that it'll help reduce the amount of granulation tissue we tend to get around her button.
The belt is to help protect the button from getting caught on things, and to help route tubing if you need to leave it connected like we did when we were doing continuous feedings. I really wish these had been available when Acorn was using his only occasionally - we had more accidental tube removals due to him sliding around on his belly than we'd hoped. They're all terribly cute, and the belt is sized to grow with her so we'll probably still be using it when she eventually gets her tube out.
Because we weren't sure how long we would be doing the continuous feed bit, we also got a backpack from Feeding Essentials for Leaf's feeding pump. I really like it, and if we can get her to be even a little less pukey I can see it coming in handy; right now we're limiting feeding in the car to only if we can't avoid it - even without the risk of projectile vomit, trying to bolus from an open syringe in a moving vehicle is the definition of a disaster waiting to happen, so bolus feeds with the pump would be great in the car.
There are a number of people on facebook and on Etsy who make these sorts of things for feeding tubes - got any recommendations for anyone, or other suggestions of bling we ought to investigate?
We've managed to get Leaf transitioned back from all of her feeds being via j-tube (straight into the intestines, bypassing the stomach) to being via g-tube (straight into the stomach). We're not vomit free, mind you, but close enough that we're willing to live with it as-is. I need to contact the vent clinic team to talk about how long we need to go like this before we can have her g-j button switched back to a g-tube button. Personally, I suspect that would help us some anyway, as there will not be a tube from her stomach to her intestine that way, and the button itself will be smaller, and easier to get it good and snug so it's not wobbling in her stomach and causing more vomiting.
For Acorn, we used Button Buddies for a long time - until his tube was the wrong size and started leaking. For Leaf, this week in the mail I got some similar button wraps, and a feeding tube belt from Belly Buttons - these are super soft fleece on the back and cute butterflies on the front, and we're hopeful that Leaf's super sensitive skin will like these better than the gauze we've been using, and that it'll help reduce the amount of granulation tissue we tend to get around her button.
The belt is to help protect the button from getting caught on things, and to help route tubing if you need to leave it connected like we did when we were doing continuous feedings. I really wish these had been available when Acorn was using his only occasionally - we had more accidental tube removals due to him sliding around on his belly than we'd hoped. They're all terribly cute, and the belt is sized to grow with her so we'll probably still be using it when she eventually gets her tube out.
Because we weren't sure how long we would be doing the continuous feed bit, we also got a backpack from Feeding Essentials for Leaf's feeding pump. I really like it, and if we can get her to be even a little less pukey I can see it coming in handy; right now we're limiting feeding in the car to only if we can't avoid it - even without the risk of projectile vomit, trying to bolus from an open syringe in a moving vehicle is the definition of a disaster waiting to happen, so bolus feeds with the pump would be great in the car.
There are a number of people on facebook and on Etsy who make these sorts of things for feeding tubes - got any recommendations for anyone, or other suggestions of bling we ought to investigate?
Saturday, February 11, 2012
Feeding Tube Awareness Ideas
Today's Topic: Show us your awareness video / Share your awareness idea.
No videos here - we're busy trying to get Leaf out of the hospital and home.
I do think, though, that there are plenty of reality TV shows out there, and surely someone with a feeding tube can get on one of them and show off their tube for us all. Or maybe some cartoon?
Friday, February 10, 2012
Feeding Tubes: What do Doctors Need to Know
Today's topic: What do you want clinicians to know about the day-to-day life with a feeding tube?
Two things:
1. Surgeons who put feeding tubes in believe that the only problem with them is leakage. Of course, that's the only problem you'd see your surgeon about, because they're the guys who measure to figure out what size button you need, and if it's not leaking, you don't need a new one. The other problems are all manged by other disciplines.
2. Doctors don't often get the amount of work that is required with tube feedings and attempts at oral feeds. They don't get the effort that is required to eventually transition most kids from tube feedings to oral feedings. They don't get the time required to get from continuous to bolus. They don't believe when parents tell them it's not going the way they were told it would go. They don't have a problem with prescribing continuous feeds, because they don't ever do the work of keeping the pump running.
Thursday, February 9, 2012
Feeding Tubes & Medical Professionals
Today's topic: The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact.
Oh my.
I could tell you stories, but the situation we saw over and over amongst medical professionals was shock and amazement that Acorn ate anything orally, because he had a feeding tube.
It's not like the tube blocks his mouth or esophagus or the exit from his stomach. It's not like it's all or nothing.
The other big issue we've seen with Leaf is in regards to breastmilk - clearly, if she's not eating orally, she must be getting formula, right? (to be fair, there's a post coming soon about the end of pumping, but seriously, there's no reason a mom can't pump milk and feed it through that tube, you know?)
The other problem with breastmilk and tube feedings is that breastmilk loses calories when fed continuously - the milk fat sticks to the tubing walls, and the child never gets that fat, to the tune of somewhere between 10% and 50% of the available calories. We've had to explain this to multiple doctors, and explain it to nurses, because it means you have to set things up certain ways to get it to work properly with a feeding pump.
Then again, we've had nurses ask about feeding Acorn through his trach, so maybe it shouldn't surprise me.
Wednesday, February 8, 2012
Tube Feeding Attitudes
Today's topic: How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?
I'm not sure that many of our friends or family have changed their minds. A few see it as a necessary evil, a few think it's too scary to think about, and a few just hope that ignoring it will make it go away.
It's kind of hard to argue with results though, and Acorn is proof that tube feeding can work wonders - he was below 3% for size when he was born, and he's now around 40% for actual age, and above 50% for adjusted age.
Tuesday, February 7, 2012
Life With a Feeding Tube
Today's topic: Understanding Life with a Feeding Tube - Explaining a day in the life/daily routine of tube feeding and all it requires
I think the hardest thing with Acorn was the puking. For a long time, he puked 5 or 6 times a day, every day. We could not go to a restaurant without him puking. If he picked something up and put it in his mouth he might puke. If he was mad he puked. If he was hurt he puked. If he was scared he puked.
With Leaf, the thing to understand is that she is being fed continuously. 24 hours a day, she is hooked to a little pump, with a bag of milk or formula to feed into it. We carry it everywhere she goes, just like we now carry her ventilator and oxygen - everywhere - it's yet another tether.
When the pump is empty, it alarms. If a tube gets crimped, it alarms. If it thinks it's done, which clearly it can't be since we're running 24 hours a day, it alarms. It alarms no matter what time of day it is because she has to keep being fed or she doesn't get enough calories and fluids to be healthy.
We have a cute little backpack to carry the bag and pump in (actually, two different styles of tiny cute backpacks), but it's still there, in plain sight, everywhere we go.
In either case, having a tubie means planning ahead. Depending on whether or not they take anything orally, you can't stop at a convenience store for milk, and you often can't stop at a grocery store for formula. You can't just run through the drive through and hand their share of dinner back to them in the back seat.
When using a feeding pump, it also means being concerned about electricity. Most pumps will run 24 hours on a charge, but you keep it charging at home so you can go out. If the power is out very long, you can have a non-functional feeding pump, and that's not good either.
Monday, February 6, 2012
Why a Feeding Tube
Today's topic: Why my child has the tube they have now
Both Acorn and Leaf had feeding tubes as tiny preemies because they were too young to coordinate suck-swallow-breathe the way full term babies do.
Acorn kept his tube due to oral aversions - anything near his mouth made him vomit. He was almost completely orally fed at one point, but developed those aversions as part being a preemie. He was intubated for 8 weeks, and had a feeding tube in his mouth after that until he got his trach because he needed the space in his nose for the CPAP and the nasal cannula. He also missed the suck-swallow-breathe window after his trach was put in. It took us until he was 2 1/2 to get him to eat enough orally to sustain and grow, and even now, we supplement with a limited amount of special high calorie formula to make up calories and nutrition he's not getting on his own.
Leaf has a feeding tube because her respiratory status was so marginal when she came home that she could not coordinate suck-swallow-breathe - she was breathing at 60 breaths a minute, and a child cannot drink that fast. She *was* partially orally fed before this hospitalization. She's now being fed through a "J" tube, which goes into her jejunum, the upper part of the intestine just below the stomach. This is because she was extra pukey because of a combination of meds that slowed her digestive system, meds that made her nauseated, existing reflux, and the risk of aspiration while she was very sick. Plus she was just a pukey kid to begin with. We are hopeful that we'll be able to work our way back to something resembling a normal feeding schedule soon, with more typical feeds going straight into her stomach, but it will take time.
Sunday, February 5, 2012
Feeding Tube Awareness Week
This week I'm hoping to post every day on topics for the second annual Feeding Tube Awareness Week. You can learn more from the Feeding Tube Awareness Foundation.
Today's topics: Why awareness is important to my family - What would be different for me/my child if tube feeding was better understood?
Awareness is important to us because we're on tubie #2 here. Because feeding tubes are "normal" at our house. Because some kids - my kids - would (would have) starve themselves, because they're unable to successfully eat orally.
Awareness would mean fewer stupid comments from doctors (who should know better). It'd mean fewer parents giving us dirty looks because their kid asks about our tubes. It'd mean fewer people staring at us when we're out with Leaf - in her 5 days at home her feeding pump often went wherever we did, and that caused a lot of consternation for some people.
Even post-feeding tube, Acorn gets a lot of funny looks. "Every kid" eats candy, right? What do we mean he doesn't eat cookies? Yes, he's 3 1/2 and still drinks milk from a bottle....at least he drinks.
So, in short, it'd mean a lot less hassle in our lives.
Today's topics: Why awareness is important to my family - What would be different for me/my child if tube feeding was better understood?
Awareness is important to us because we're on tubie #2 here. Because feeding tubes are "normal" at our house. Because some kids - my kids - would (would have) starve themselves, because they're unable to successfully eat orally.
Awareness would mean fewer stupid comments from doctors (who should know better). It'd mean fewer parents giving us dirty looks because their kid asks about our tubes. It'd mean fewer people staring at us when we're out with Leaf - in her 5 days at home her feeding pump often went wherever we did, and that caused a lot of consternation for some people.
Even post-feeding tube, Acorn gets a lot of funny looks. "Every kid" eats candy, right? What do we mean he doesn't eat cookies? Yes, he's 3 1/2 and still drinks milk from a bottle....at least he drinks.
So, in short, it'd mean a lot less hassle in our lives.
Tuesday, July 19, 2011
Tomorrow is a Big Day
Tomorrow we take a big step towards being less medically fragile - Acorn's feeding tube is being removed. It's somewhat anticlimactic, seeing as how it's only use since December was to keep him hydrated when he had rotavirus earlier this year....other than the fact that they're actually going to put him under in the OR and sew the hole shut (which we were originally told was not generally required, but the surgeon says it's been there long enough that it likely won't close on its own, so why waste time).
We're having a lot of changes this year. New baby, new round with the NICU, no g-tube, and no trach (and no nursing, plus a new nanny) is coming...and that doesn't include things like this week's first ever sentence: "I go round round" when he was told we were going to see the occupational therapist, who lets him spin on her swings.
No wonder we're all stressed.
Thursday I go back to work - not looking forward to that.
We're having a lot of changes this year. New baby, new round with the NICU, no g-tube, and no trach (and no nursing, plus a new nanny) is coming...and that doesn't include things like this week's first ever sentence: "I go round round" when he was told we were going to see the occupational therapist, who lets him spin on her swings.
No wonder we're all stressed.
Thursday I go back to work - not looking forward to that.
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