Tuesday, June 26, 2012

That silly trip to Holland

I have to say, 4 years into this special needs parenting thing, that I'm still surprised by how many people like that "Trip to Holland" piece. If you're not familiar with it, go read it now and come back, because the rest of what I'm about to say will make far more sense.  I'll wait.

Got it? Good. Now then....back to Holland

This piece comes up every few months on some special needs board or another, usually posted with a comment along the lines of "Have you read this? It's great!"

First, I don't think it's all that well written. It's smarmy and sentimental.

Secondly, I think it's a terrible metaphor. Some people might want to go to Holland, and if you ended up there and hated it, you could just hop the train and go to Italy anyway - it's only about 1000 miles from Amsterdam to Rome. It's not like this is a case where you look around and think:

Finally, she mentions that it's not some horrible disgusting place with famine and disease. Maybe for her it wasn't...but that's not true for all of us.

We've spent more than 1/3 of our days as parents with one or more children in the hospital. Have you looked around a hospital lately? There's a reason we don't let our kids play on the floors. There's a reason you're more likely to get life threatening illnesses in hospitals than at home (in 90 days in the PICU, on contact precautions, Leaf had a infection in her blood, 3 rounds of bacterial airway infections, and C.Diff...thus far, she's had *ZERO* infections in almost 5 months at home).

And don't get me started on how to feed a child who won't eat. Feast or famine, doesn't matter if your kid has oral aversions.


What would be a more apt metaphor?

I'm thinking it's more like carrying a heavy backpack all the time (around here, with ventilators and oxygen, that's sometimes more truth than metaphor). In a lot of ways, it's like everyone else's life, except when you realize you don't fit at a booth in most restaurants, and it's a lot more work, and everything is complicated by having to figure out what you're going to do with this backpack while you're living your life.

But sooner or later...you kind of get used to the backpack and the challenges that go with it.

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:

This time I made 12 single-serve breakfast things. Eggs, sausage, and hashbrowns, with cheese on top. These triangle shaped silicone cupcake wrappers are actually a little larger than normal cupcakes, and work really well for this - the silicone lets them pop right out when you go to eat them.

  • 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
Peel and shred your potatoes. Squeeze the water out (or don't), and then put a bit in the bottom of each cup - you want enough to cover the bottom, but not a super thick layer). I sprinkle with salt and add 1/4 of a slice of butter. Bake at 350 for about 30 minutes - you want them to be dry in the middle and starting to brown around the edges.

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.

Wednesday, June 20, 2012

Busy, busy, busy

Oh yay, spring birthday season (we have 1 child in late May, one in mid-June, and my mother-in-law in June too) is over. Father's day is done too. But that's not all that's kept us busy.

There's been urgent letters to the school asking why Acorn hasn't had an AAC evaluation yet, and how that impacts his IEP....and arrangements to meet with a lawyer, who it looks like will be following along back stage, and putting us in touch with a good advocate.  Expensive, but....gosh I feel better having explained the whole situation with the school's anti-ASL stance and their lack of progress on goals that Acorn has already met at home, and having him backed up my feelings about the situation. I walked out of our meeting with suggestions in hand....so that was well worth the hour drive each way and the not insignificant check I wrote for the privilege.

There's been a push for us to provide Acorn with a stand-in AAC (augmentative and alternative communication) device until the school or private therapy (or both) got around to doing something along those lines, so we ended up buying him a Nook and installing Tap to Talk. Now to get him to use it....

Acorn has been discharged from PT and OT, with loads of instructions on things he needs to practice at home. He's also had his last day of school for the year, and been set up to go to Extended School Year (ESY) - the special ed version of summer school - though it seems quite useless, being 90 minutes twice a week.

Leaf is making strides too - not quite sitting, but close, and mimicking everything and anything. And eating baby food- who'd'a thunk it?

There's also been a lot of running around, trying to figure out what projects need to be done during my 4th of July week of forced vacation. My husband may be taking that week off too, so it's looking like power washing & staining the deck, and replacing the water heater, dishwasher, and freezer are all on the list. We're still running on the used water heater a friend installed when ours went out about 2 years ago. The dishwasher leaves dirty dishes frequently. And we will likely be giving our current freezer to K, and replacing it with a bigger one so that we can work on eating out less.

And I've been writing stuff for MoonDaySchool.com, which you should check out if you haven't already.

Plus, you know, normal things like sleeping and eating and changing diapers and going to work and all....because we don't have enough going on as it is.

Friday, June 15, 2012

A Belated Birthday Post

Acorn's birthday was Wednesday. 4 years of the world's best hugs and a deep dive into the world of the medically complex.  Who would have thought that a baby less than a pound and a half would, 4 years later, be 35 pounds and waist high on me - so tall that I struggle to carry him upstairs when he falls asleep because his feet are below my knees...I remember when he fit on my chest, between my breasts and my chin.

We're celebrating with family this weekend, and making cupcakes for the NICU.

As a birthday present, Acorn was discharged from PT yesterday, and school ended yesterday, so hopefully on Monday, he and I will be at the pool, working on teaching him to swim, finally.

A mostly normal birthday for a child who is anything but. Amazing, don't you think?

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Friday, June 8, 2012

Your MoonDay School Adventure Giveaway

I'm giving away a 6 month membership to http://www.moondayschool.com - a $30 value!

Your MoonDay School Adventure is my newest project - a place to gather Pagan parenting resources, and in particular, a place to offer parents pre-planned lessons for workshops at festivals, for teaching their own kids, or for creating a Moon School to teach a group of kids about Pagan beliefs and practices.

Paid members have access to download all lesson plans, and have access to discussion forums for each lesson, along with access to all the free resources on the site.

This contest runs from 12:01 am June 8 until 12:01 am June 15. Winner will be notified by email later that day, and will have 4 days to claim their prize or another winner will be chosen.

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Note: This promotion is in no way sponsored, endorsed or administered by, or associated with, Facebook. We hereby release Facebook of any liability.

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.

The creepy look of just sprouting alfalfa
A jar full of alfalfa sprouts
French Lentils, Just getting started

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....

Monday, June 4, 2012

Let's Talk Trachs

Since it's Birthday Bash, it occurs to me that I ought to talk a bit about this trach thing, and what it means around here. Everyone outside of this special club of trach families seems to have their own opinions of what it means to have a trach, and most of those opinions are dead wrong.

First, having a trach doesn't really tell you anything beyond the fact that the child who has it needed a stable airway. It doesn't say anything about their cognitive development, physical development, immune system, or ability to breathe without it. Maybe there's something structurally wrong with their airway. Maybe their brains forget to breathe. Maybe there's no room inside their ribs for them to breathe on their own. Maybe there's a problem with their lungs. Maybe there's a problem with their diaphragm. I'm sure there are other reasons too, but on the rare occasion you meet a kid with a trach, please don't make assumptions.

Around here, Acorn and Leaf's trachs were both because of Bronchopulmonary Displasia (BPD) - the need for oxygen past an infant's due date. This illness is also known as Chronic Lung Disease (CLD) or Chronic Lung Disease of Infancy. In any case, the long and short of it is that their lungs were damaged because they were premature - the little sacs in their lungs that do all the oxygen exchange are trashed...permanently. The current theory is that it comes from being on a ventilator as a preemie, but as more and more pregnant moms are getting steroids before delivery, there's a new crop of BPD kids who, like Leaf, were never vented as neonates, and yet they still develop the same symptoms, so there's now some suspicion that it's not just the vent that causes the issue, but that the damage is maybe there for kids with breathing difficulties from the get-go.

Acorn, 2 days old.

So if it's a permanent thing, why do kids eventually get off oxygen (if they're a more typical preemie with BPD), or off their ventilators and oxygen and get their trachs out if they're special like my miracles?

Well, in case you haven't noticed, babies are small (and preemies are even smaller) - their lungs are not as big as an adult's. As they grow, their lungs grow with them, making new lung tissue that isn't damaged. Those damaged spots, though, will always be there - we can see them in Acorn's chest x-rays when he's sick. See the x-ray below from Wikipedia? See all that sort of streaky hazy stuff in the lungs? That's what BPD looks like.

Image courtesy of Wikipedia

So, then if having a trach doesn't mean there's anything wrong with a child's immune system, why all the effort to avoid germs?

It's like this:  If you break your leg, are you going to throw away your crutches the next week and run a marathon?  No, of course not. Similarly, kids like mine are already struggling to breathe. They're at a disadvantage, because their lungs are not healthy and strong. Keeping them healthy now means that they have time to grow stronger before having to fight off some illness. All those streaks in that x-ray? Those are parts of their lungs that don't work, so a small child like Leaf probably only has half the working lung tissue she ought to have, and that makes it just that much harder to deal with the consequences and symptoms of an illness.

Furthermore, having a trach does bypass some important parts of the body's immune system, like the nose. A trach is direct access to the lungs, right into the place where germs can cause the most havoc.

On that front, I'm going to go a bit political and bitchy:

Vaccinate your kids.


The whole concept of herd immunity is that even if a vaccine isn't 100%, when most everyone is vaccinated for an illness, there's no easy place for that illness to take hold and become an epidemic. Even people who aren't vaccinated are less likely to get the illness, because there's fewer active infections to pass it on to them. Vaccinating your kids helps protect kids like mine (who are vaccinated, by the way), and that's important, because the kinds of things we vaccinate for are the kinds of things that would be lethal to Leaf right now, and would likely land Acorn in the hospital for a long time.

Shoot, the 90 day PICU stay Leaf had this winter which included getting a trach because we couldn't wean her off the ventilator she needed when her lungs couldn't cope with the illness was caused by a run-of-the-mill enterovirus - and rhinovirus, the common cold, is just a subset of the enterovirus family. Acorn spent 4 days in the hospital with that same illness, on as much as 4 liters of oxygen.

Anyway. More posts to follow, talking about what sorts of things we do around here that people without trachs don't do. Be well everyone.

Friday, June 1, 2012

Riverstone Runes Giveaway

Riverstone Runes Giveaway

One set of hand-painted Elder Futhark runes, painted with my special heat-set paint on tumbled river stones. Comes in a cloth pouch with instruction sheet.

Runes made from other stones can be found at Kadiera's Cauldron

Contest ends at 12:01 am Friday June 8. Winner will be notified by email later that day. Failure to claim prize in 4 days will result in a new winner being drawn.

a Rafflecopter giveaway

Note: This promotion is in no way sponsored, endorsed or administered by, or associated with, Facebook. We hereby release Facebook of any liability.