Our Little Acorn

Pagan Kids and Money

2012-01-24T19:53:00.000-05:00

I've been thinking, as Acorn gets older, that we're going to have to start thinking about allowances and money. He's discovered coins - he's not sure what to do with them, but they're interesting, at any rate.

I'm fascinated by multi-compartment banks. There are two types: 3 compartments and 4 compartments.

The three compartment ones are generally set up for money to spend, money to save, and money to "share" by which some people mean charity and others include things like gifts to friends. Some people mean for that "share" bit to be tithing to church specifically.

Four compartment banks usually add "invest" - money to be saved for the long term

A lot of the places that invent these sort of things talk about tying money to family values using these banks. I'm wondering if there's a better model for Pagan kids?

Wiccan families might try to do some sort of 5 compartment thing:

earth - investing for the future
air - spend on things you need
fire - spend on things you want
water - saving for a rainy day
spirit - charity

I'm not super keen on all of those options, but I'm still thinking about them.

I also was thinking in terms of runes. Fehu is probably money you're going to save for the short term; Gebo for charity, Othala for long term investment. Maybe Wunjo for money you're spending?

What do you think?

*****

Obligatory disclaimers:
Images above are affiliate links to amazon.com. I get a tiny percentage if you click and buy.

Every kid doesn't...

2012-01-22T11:31:00.000-05:00

This isn't what I was supposed to be writing today, but it's making me very frustrated.

My kids have WIC because they've got Medicaid due to their health issues. Acorn's WIC gets us Boost Kid Essentials 1.5, a specialty formula to make up extra calories & nutrition he doesn't get from regular food with his oral aversions and typical 3-year-old picky nature. It also gets us some supplemental foods for him, like bread and milk (which he drinks a lot of) and juice and peanut butter and cheese. Leaf gets some baby food (which she's not ready for, but we're stockpiling for blenderized diet use) and since she's getting breastmilk only right now, they provide some supplemental foods for me instead.

One of the things we have to do for WIC is online nutrition courses. One thing in the lesson I did today stuck out to me - it said:

Babies and toddlers WILL eat if they are hungry.

Sigh. No, not all of them will. Acorn wouldn't. Leaf can't. I know plenty of kids who don't eat, who would starve given the opportunity. And I know kids who would likely get sick, or even die if they did eat orally. We've heard it many times, but this one just irks me, because it's so clearly not true, from someone who is "teaching" nutrition to families of "at-risk" kids.

But it's not just eating that not every kid does.

We watched a potty training video that has a popular little red furry character as the child learning to use the potty. They say that all children learn to use the potty...and yet I know young adults who are still in diapers. (and this one is a sore spot right now, since we're in the midst of a potty training strike with Acorn).

Even in an online moms group I belong to, when discussing possible gifts for a certain age group, one mom said she'd never met a kid that didn't like playdoh. Clearly she's wrong - she's met Acorn, and he can't stand playdoh - but I'm betting he's not the only kid she's met who thinks it's disgusting.

I really wish people were less emphatic about knowing that every kid does these things - it'd make the places where my kid isn't typical stand out so much less.

Life in Two Places

2012-01-16T11:30:00.000-05:00

We have now spent three weeks driving 51 miles back and forth to the hospital pretty much every day. We're getting closer to the end on that, but we're not there yet, and so it continues. My online time has been cut considerably, between driving and trying to keep Acorn occupied in our corner of the PICU - no doors, no walls, so I can't just turn him loose.

The dishes are never caught up. The laundry is never caught up. There's never enough time for Leaf, and never enough time for Acorn, and never enough time for me or for spouse and I as a couple.

Which is not to say I'm not writing - that's basically mandatory for sanity. It just means that writing is in fits and starts with interruptions, and that other things are suffering because of it.

Tomorrow is our meeting with the vent team to get Leaf out of the PICU and onto the vent unit; after that, they're anticipating a week, or maybe a bit more, before we can go home - it's just a matter of lining everything up.

This is good....we're almost out of frozen breastmilk, and I'm not keeping up with her by pumping, particularly when I don't get the good long skin to skin snuggle sessions we had in the NICU. Hopefully we can track down enough donor milk once she's home (the hospital forbids it) to keep her off formula for a bit longer; if not we'll supplement with some crazy high-cal formula that the hospital has lined up for us.

She's probably coming home on continuous feeds. At the rate we're going, we'll need a second feeding pump, as we switched to j-tube feeds (a feeding tube that is inserted past her stomach, so food completely bypasses it) because of medication induced nausea and slowed gastric emptying, and transitioning back to all g-tube feeds (into the stomach) is a very slow process for Leaf. After we get all the way to continuous g-tube feeds, we'll also have a slow transition back to bolus feeds (ie, X ounces in 15 minutes or so every few hours, rather than a continuous drip), because she's been on them so long.

And now it's late, and I should sleep. A friend is keeping Acorn tomorrow so we can go to our meeting - Acorn has the sniffles, and the hospital will not let him in that way, so it's find a sitter or one of us skips the meeting, and we likely lose our spot on the vent floor, because you have to have the meeting, and both parents need to be there. Sigh.

Thinking about Imbolc

2012-01-08T10:42:00.001-05:00

...over on The Pagan Household today.

Imbolc with Small Children which is part of a series about the Sabbats I'll be doing all year

Hospital life is like a pinball machine

2012-01-05T09:00:00.000-05:00

...and you're the ball.

It's been quite a ride the last few days. Bethany has been vomiting a lot but we think we have it narrowed down and mostly under control.

Cardiology last week said they wanted to wait on her PDA, but this week's docs changed their minds.

side note: if you haven't spent much time in a hospital, the various attending, resident, and fellow doctors change by week or by month, and every time they change, the plan is likely going to change because it's a new group of people. They call it practicing medicine because they keep practicing on you until they get it right!

ahem

Pulmonology didn't like cardiology's plan because Leaf's lungs and the plan at hand were not likely to play well together, so there's been a lot of discussion amongst our various staff to figure out what to do.

And that's the nice explanation, not including my bitching or telling them their communication skills are less than one would hope, and not including me accusing them of not really having a plan to get us home anytime soon and no intention of having one.

So, as of dinner time Wednesday night the plan is to close her PDA via a cardiac catheterization.

Which is scheduled for TODAY

*TILT*

Wish us luck!

Our Spacy Sensory Bin

2012-01-04T09:54:00.002-05:00

We missed doing a new bin for December, but here's January's space themed bin.

Contents:

4 pounds of black beans

1 Toob of space figures (satellites, space shuttle, astronauts, a space chimp, etc).

parts of 2 packs of glow-in-the-dark stars and planets

2 light-up squishy ball things (on clearance at walmart for $0.50 each)

I also added a vintage 1950's aluminum tumbler, a tea strainer ball (taken apart), a spoon, and a tea strainer spoon.

So far, Acorn is most interested in the big pink crescent moon and the tumbler - it makes a nice sound when you bang it on the counter and when pouring beans in and out of it. We just put it together last night, so we haven't had an opportunity to see what he thinks of the glowing stars in the dark.

People of the Library

2012-01-02T20:48:00.002-05:00

There's a saying that Pagans are not people of the book, we are people of the library. I've certainly got a substantial library....that includes a fair number of completely unread books. If I ever win the lottery or otherwise sort out how to get a Pagan temple operating around here, we're going to have an awesome lending library.

All that aside, I want to put more time into taking care of me this year - we started 2011 knowing it was likely to be a complete loss and that proved to be true and then some. One of the things I want to do is read more books, and I've run across several reading challenges that I want to do to try to work on this reading thing. I've got fairly modest plans - just 6 books this year - but given the general level of chaos here, I can't always get the time to myself I want.

I'll be adding to this post as the year progresses, detailing what I've read.

First is from The Domestic Pagan:

My goal there: "Initiate Read 5 -10 books"

Second, Melissa's Eclectic Bookshelf:

My goal there is "Maiden: Read 6 - 10 Witchy Books" - Melissa is offering a prize based on reviews; I'm not sure I'll write reviews, but we'll see.

And finally, from Magaly over at Pagan Culture:

It looks like my goal there is "Elemental Reader - 4 books"

Hm. I wonder if Pagan kids books count?

Anyway, I'll probably mention books I've read in my updates. Poke me if you want to know what I'm reading and haven't heard much from me lately.

Books for Pagan Kids

2011-12-31T15:24:00.001-05:00

I recently ran across a neat website, paganchildrensbooks.com - they're an online indie bookstore that specializes in, as their name says, books for Pagan children. While they don't have every book I've found for Pagan kids, they have a ton of books I'd never heard of, which is quite cool, along with games & other Pagan-y things.

It's nice not having to try to figure out what might be Pagan and what might be overtly Christian, which is frequently what happens when I'm looking for books for Acorn and Leaf online. I don't mind a few minor references here and there, but clearly we need opportunities to teach our kids our beliefs and values, because so much of the mainstream world (most caregivers, teachers, playgroups, and the like) is going to teach them about Christianity - at least, the generic version of it.

There still aren't many books for the 0-3 age range here, but I'm having a hard time finding those anywhere. Sigh.

*****

Obligatory disclaimer: affiliate link here, but the opinions are mine. I get money if you buy stuff following that link - given the amount I'm spending on gas to head to the hospital every day, every penny helps!

New Digs - Not So Wordless Wednesday

2011-12-28T23:09:00.001-05:00

Oh, there's so much to say, and I haven't been at a real computer with a real keyboard in days, and I don't even know where to begin.

Last Friday (Christmas eve eve) at around 8 pm, I got a call from our hospital that the transfer for Leaf to a bigger hospital had been sorted out...and was happening within the hour. Thus began a whirlwind of helicopters and new doctors and nurses and new rules and new places and just...chaos.

At any rate, we've moved to University of Michigan - CS Mott Children's Hospital. The hospital is brand new - they moved from the old hospital on December 4th. The hospital is nice - really nice - even the public bathrooms on the PICU floor are nice - showers are included in each unisex bath for parents who are staying with their kids:

The way they handle breastmilk makes me happy. The family lounge is well stocked and set up for people to actually use. The elevators talk, which Acorn thinks is the funniest thing ever. The cafe has decent food. Parking is inexpensive ($2/day max for patients and visitors with validated parking tickets). The views from most of the patient windows are stunning - here's ours:

Leaf got to ride in a helicopter, because they figured moving a ventilated patient from a PICU to a PICU was not something to do on surface streets. The flight crew brought her a pair of wings and a bear dressed in a UofM flight suit:

We're just waiting for a bed on the vent unit now, which they're hoping to have for us on Monday. We are also planning a meeting with the vent team for next week to get things lined up and a plan to get Leaf back home. Until then, we're just hanging out in our nifty high tech corner of one of the PICU bays:

At the rate we're going, I'll likely not be posting much the next few weeks. It's an hour drive one way, and while we're still in the PICU, Acorn and I will be out there most afternoons. We're debating how to handle things once we move to the floor, because I suspect Leaf will need more parental involvement. Our friend K has graciously offered crash space at her house, just a few minutes away, and has offered to come keep Acorn busy from time to time, since she works just a few blocks away in a research lab on campus. We still have to clean out her bedroom at home too, and take care of Acorn's appointments and a ton of paperwork for both kids, and getting to a computer that I can actually type on has been a heck of a challenge.

Hope you're having a wonderful holiday season!

Prompt: Winter Holidays and Family

2011-12-23T10:00:00.000-05:00

From Pagan Blog Prompts:
This time of year, there are many different celebrations going on, most often ones that bring family close together. While it can be nice to see everyone again, it can also be stressful, when your family doesn't feel the same way about things as you do.

So, how do you deal with them? Do you simply avoid all talk of religion, even though the holidays can be very religious? Or perhaps it's just easier to avoid family all together....

If your family actually believes as you do, then perhaps these holiday gatherings aren't tough at all. Please, share with us how your Pagan winter family gathering go...

We generally try to avoid discussing religion no matter what the occasion for a family gathering - we have several older relatives who we've been told never to tell anything about anything.

What to do with the family is complicated here not so much by religion but by our kids, since most of our family gatherings are on the secular end of the holidays. We haven't been out of town to see my side of the family for a holiday since 2007, because we felt travel with Acorn was too difficult (and too likely to expose him to germs). We had been meaning to travel this year, but Leaf's stay in the PICU pretty much brought that to a halt. Whether we will travel with her now that she has a trach remains to be seen, and is dependent on her stability.

You'd think that after 11 years of marriage (and 15 years together) we'd be comfortable with each other's family's traditions ,but we're still working through that as well. What gifts people choose, what foods they have, how they plan for a holiday dinner - all of these things are things we're still trying to get the hang of.

And then we have to add in sorting out our own traditions...and it just makes it a complicated mess.

Blessed Solstice, One and All

2011-12-22T10:00:00.000-05:00

Happy Yule! Today is the solstice, and though our celebration here has been pretty minimal, I hope you've all had a great time.

For those not reading http://www.janetcallahan.com, I've posted over there this week on Zen and the Goddess, and on using magickal workings on one's inner critic - pop over there and check it out.

One of my projects for January, assuming life settles down finally, is to put together an ebook on planning family Sabbats. I'm also working on a submission for Pagan Writers Press's Pagan Birth Stories anthology.

Enjoy the rest of your holiday season - I'll be doing battle with hospitals, doctors, and the state's department of human services. No rest for the wicked, I guess.

Frame of Reference

2011-12-20T09:00:00.000-05:00

Talking with others about how people see kids like mine - kids with substantial medical issues, medically fragile kids, complicated kids - it's been clear that part of the problem is just that the rest of the world has no frame of reference at all.

Here's the reason. People think in very simple terms - 3 boxes. You're either healthy, sort of sick (fever/cough/rash, lay around on the couch a couple days), or sick enough to be in the hospital. If you're sick enough to be in the hospital, you're there a couple days, and then home to lay around on the couch for a few days, and then you're healthy. That's how modern medicine works.

Kids like mine...well, let's talk about Leaf, because Acorn is getting closer to fitting that version of normal than he's ever been...close enough to fool people most days.
Leaf is in the hospital right now. She's been there going on 6 weeks, which is way longer than most people can wrap their heads around, much less the 5 1/2 months she was in the NICU, or the 9 1/2 months than Acorn was.

A freakin cold landed her in the hospital for 6 weeks and counting. Who goes to the hospital for a cold?

There's no going home and laying on the couch a few days in order to be normal for her after this either - we're coming home with 100 lbs of medical gear (and a car battery!) that will go wherever she goes.

No matter how happy, smiling, and normal she looks (other than the tube in her neck for breathing and the tube in her belly for eating), she's not healthy per se. She's at risk. She's likely to end up in the hospital for most illnesses. The ones she doesn't won't be a couple of days of chicken soup, they'll be the kinds of things most people go to the hospital for - oxygen (more oxygen than normal), nebulizers running round the clock, multiple meds....the only thing we can't do at home is an IV.

Even EMTs will stop and stare if we ever call 911. The best they can do is scoop us up and run to the hospital - their oxygen tank is bigger, which is about the only reason we'd call anyway. When Acorn had RSV, we called 911. The paramedic in the back with us told the hospital dispatcher that they were doing nothing for him - we'd already done more than they could think to do.

And none of that fits into one of those 3 little boxes up there.

So...schools, daycares, friends and family....all these people have a hard time knowing how to work with our kids, because they just don't get it - they can't find a way to categorize our kids if they don't fit into one of their three boxes. So they pretend our kids fit (or shoehorn them in, like the old version of Cinderella where the sisters cut off their feet to fit in the slippers).

And that's where it fails. Our kids aren't going to fit into those boxes, and a one-size-fits-all solution isn't going to work for us.

Follow-up: Antsy Pants Review

2011-12-19T09:00:00.000-05:00

A little over a year ago I wrote a bunch of reviews of training pants. One of them was for Antsy Pants. In the end, given that the plan was for Acorn to go to daycare and we weren't really sure how long it would take him to be diaper free, we went ahead and bought a dozen Antsy Pants.

We bought them new - at the time, buying a dozen new trainers was the same cost as buying used ones. We also bought the 4T size - Acorn measured just within the sizing for them, and we figured that way he could wear them as long as needed.

We've been using them for the last year, and I've got a few things I want to follow up on. We've used these in rotation when we're out of the house, and used them at daycare along with some pockets for the few months he was there. The last few months we've used them at night too - without nurses to change him in the middle of the night, we've been trying everything we can to keep from having to get up with him.

Sadly, he's actually refusing the potty completely right now, to the point of screaming if we try to set him on it....but he'll happily pee in a cup if it means not having to get out of the bath, so it's clearly an issue of he can do it, but he won't. Here's hoping the potty is more appealing in the new year.

On to the review:

First, we did have one snap go bad within the first couple months. Of course, I was in the hospital on bedrest at the time, and my husband never sent it in for repair, so I will eventually (in my copious spare time) have to replace the snap.

We notice that the stuffers they provide (microfiber towels) fit better in these 4Ts than the 2T sized ones. We've used them at night with the stuffer and a cotton doubler for all-night wear....when Acorn actually sleeps all night. That said, be prepared to change first thing, because when completely soaked, the side panels start to wick, and then you'll have wet jammies.

Acorn is now wearing mostly 3T clothes - he's about 37 or 38 inches tall and around 35 pounds, so pretty skinny. The 2T one we originally bought still fits him, though it's starting to be pushing it at night or if he poops. The overall fit of the 4Ts varies widely among the 12 diapers we have (well, 11, plus the one with the bad snap) - some fit just right, some are still loose. Also, the side panels have worn somewhat - and unevenly at that - so some of these are really loose on him, and will fall off while walking if he doesn't have pants on that will stay up. Since we frequently still let him run in just a shirt and diaper at home, this can be a problem.

Speaking of fit: these don't mix well with very runny poop. They've been okay for peanut butter consistency stuff, but a bout of diarreha in the hospital proved too much, and we had to change out the whole bed. The previous diaper (with even more liquid poo - it was so bad I didn't even try to get the snappi out of the goo to clean it) had been a prefold and cover, and the cover contained *all* of it without leaking.

There seems to be a learning curve, too, when getting the inner layer flap situated when you're putting these on the child - if the inner layers are exposed, that wicks onto pants (or runs out onto the floor). It might be better if you're pulling them on a standing child rather than putting them on like a regular diaper, but Acorn still won't let us use them that way. We had one nurse who *hated* these trainers because they always leaked for her, but in the last few months, the only leaks I've had have been cases where we were wearing them for the day and Acorn flooded the diaper - we would have (and have) had a leak in any diaper

On the plus side, he hasn't ever taken one of these off, even though it should be easy for him. Pockets with velcro, on the other hand, have been a problem lately in that respect.

One other thing I'll mention: our physical therapist loved these trainers, because she could really see how Acorn was moving his legs and hips.

On Birth and Privilege

2011-12-16T16:22:00.000-05:00

I like the idea of various groups that are pushing for more natural childbirth options - more midwives, fewer hospitals, fewer c-sections.
I see something interesting happening though - while they stress that women should prepare for their births, prepare to go into battle if they have to deliver at a hospital, birth plan in hand.....they don't stress having a backup plan. And they're mostly militant that any other option besides what they're presenting is a bad idea.
Must be nice to have the education to know what the options are. And to have health care resources (like being in a state where midwives aren't outlawed). And to be healthy enough, and have a baby healthy enough, to remain relatively low risk (based on Acorn's birth, Leaf and I automatically risked out of any midwife practice - hospital or homebirth - in the area, and obviously that was a valid reason to be required to be followed by an OB). And it must be nice to have support people who support those choices. In some places it's also a matter of money - around here, a homebirth is about $3000, though some have sliding scales. If you're low income and on medicaid, at least here, they won't touch the midwife's bill, but they'll pay most of a hospital birth, so the system is flawed to begin with.

Now, it's probably just my perspective, having twice been through a birth that wasn't what I had in mind, but if knowledge is power, then these groups are nearly as bad as OBs who start scheduling c-sections at 35 weeks. Nearly 1 in 8 babies is born early. Complications happen. And when you've planned the perfect birth and get something else through no fault of your own or the birthing staff you're working with, you're setting up a dramatic emotional upheaval - even moreso if you have no idea what the risks really are when interventions start.

I know women who have left midwives and doctors over something as simple as "we want you to have a backup plan, based on your previous deliveries." I know people who've had complications crop up in a third or fourth pregnancy after no issues in their previous ones who were completely lost when they ended up in the hospital, whose birth experience wasn't all that bad, but for whom the emotional strain of things gone wrong left them crushed, alone, and unable to bond with their child.

Does a c-section interfere with bonding? Well, you wouldn't know it to see Acorn, though I can see how it can make it harder. But what about telling women how to cope with that if it happens? Nipple confusion and breastfeeding issues? Most NICU babies here get both bottle and breast if mom wants, with apparently little or no confusion, and more effort to help women to breastfeed post c-section or while on meds like magnesium would go a long way to eliminating the problems caused by the less than optimal birth. And so on and so forth - I have yet to find *any* group that talks about these things, or provides information to moms who do have anything other than a natural birth.

Yes, we all need choices. Yes, fewer interventions are better. But it seems to me that preaching that no interventions is the only way to go hurts women and babies.

Trying Something New

2011-12-11T11:56:00.001-05:00

I'm struggling a bit with where I want things to go with life, work, and the like. I know I have to go back to work at the end of my leave (at least part time, because OMG the cost of insurance will eat us alive, and if you haven't noticed, we have some medical bills around here that insurance covers, so it's kind of important). That said, I'm mostly enjoying being home with Acorn (and with Leaf when she was home)...and there are doctors and therapists to see, and just a lot to be done that doesn't agree with a full time working schedule. Not to mention that I need to feed my soul - I need to write and create and Circle with others on occasion and do those sorts of things that fill my cup so that I can take care of everyone else.

So....

I've been reading Goddess Leonie's blog for a while, and I love her energy and her approach to life. I love how she manifests things in her life. I've been drooling over her Creating My Goddess Year 2012 workbook too - and debating whether or not to get it because money is tight here, for a few more weeks at least, until insurance money starts rolling in (and hey, at least I got most of those ready to go out in Monday's mail, so I'm making progress, right?). But I finally decided that it's less than $10, so I'm going for it.

I'm hoping to post some here about it, and likely will post more over on my "more me, less mom" blog, http://janetcallahan.com about how it goes as I work through it.

But first, I just have to say that it's as beautiful in person as the pictures on her website suggest:

Here's to 2012 being a little less complicated, eh?

Obligatory disclaimer: I bought myself the book - putting on my oxygen mask first, as most special needs moms are reminded from time to time. I want to join the Goddess Circle, but that will have to wait for insurance money to pay the bills...unless you all click on those affiliate links in this post and buy yourselves some of the lovely stuff Goddess Leonie does so that I get some spending money :)

calendar, calendar, who's got the calendar?

2011-12-10T11:53:00.000-05:00

Sigh.

No trach yet. Maybe Monday, if the surgeon can work us in, or else Tuesday, probably late, once the ENT comes back from his weekend trip. Or something....there have been so many scheduling issues with this ENT, I'd rather we just avoid him.

There are other things I want to say, but my brain is still uncaffeinated, and Acorn is not napping today, so there's a lot of chaos.

...things about supporting families in the hospital this time of year, and about how quickly it seems the year has gone, and how soon both Leaf & Acorn's birthdays will be. About the "war" on Christmas (and how hard it is being a non-Christian some days), and about writing and what I'm learning about myself during this leave of absence from work....

But I think it will all have to wait for another day.

An Overdue Update

2011-12-09T10:16:00.001-05:00

It's been a crazy few weeks here.

Leaf is getting a trach - apparently tonight, based on the phone call I just got. We were planning for Thursday, then Saturday, and now today. Ahhhh!

Then we're probably transferring about an hour and a half away to a larger hospital to have her PDA surgically closed.

And then hopefully home to try to find our groove again, this time with more appointments to shove in the same amount of time.

*****

Acorn has not slept a full night since his hospital stay. We're all exhausted.

He's also on a potty strike....unless it involves running around naked and peeing on the stairs, which makes them slippery. At least he wasn't hurt falling down them.

We're waiting for a spot to have him evaluated for a speaking device. I'm hoping it goes well; we're all terribly frustrated with his limited communication skills

*****

All in all, this stay at home mom thing is mostly working. I'm less stressed, the house isn't a total disaster, and no one has died. Here's to the next 4 1/2 months.

Pagan kids out in the world

2011-12-05T17:52:00.001-05:00

There are reports of a boy in Georgia being bullied by his teacher for being Pagan. This sort of thing is something I worry about from time to time when it comes to my children. Not just at school, but at doctors' offices and therapy facilities, scouts and playgroups, in the hospitals we've stayed in and with the nurses Acorn had.

I like to think it won't happen here - a small-ish city in the suburbs, not in the Bible belt (though there are about 4 dozen churches in town), which boasts about its diversity. A place with a mosque, a Hindu temple, several synagogues, and Christian churches of all flavors (and in a number of languages). A place where within 5 miles, I can find several Asian grocers, a couple of Indian ones, a Pakistani grocer, a Mexican grocer, a Polish market, and a couple of Halal (Muslim) butcher shops which also sell other imported goods. A strip mall up the road boasts an Italian deli, a Jewish bakery, and Middle Eastern, Thai, and Greek restaurants.

And yet... our newly elected mayor is making the news for posting anti-gay statements on facebook.

Kinda makes you wonder whether we'll ever figure out how to all get along, doesn't it?

21 Days of Yule

2011-12-03T09:12:00.001-05:00

Today I'm a guest poster over on The Pagan Household talking about Yuletide Traditons - go read and enjoy, and watch for the other posts in the 21 Days of Yule.

Little Bits and Bobs

2011-11-29T21:51:00.001-05:00

It's been busy here. I'm still catching up on laundry from Acorn's week in the hospital and dishes from Thanksgiving.

Leaf is still in the PICU and still vented. We're hoping that we're finally making progress in getting her off the vent, but it's really all up to her.

Acorn is home from the hospital as well, and back to his normal self, other than the return of nightmares. It's been a long time since that was a multiple times a night every night thing, and I don't really know how to help him. He's come up with a handful of new words this week though, and has been more actively signing things since his hospital stay (though sometimes he's just signing "yes" when he means "I want that thing over there"

I've been trying to spend my evenings in the PICU writing. Some days it works better than others - but there are projects in the works and things that need to get done. At the very least, it's time to wind down from being "on" all day with Acorn. We're both adjusting, and it's a process...we're not comfortable with it yet, but we'll get there.

I have nothing really deep to say right now - just too darn tired after a night of being up a fair portion of the night with Acorn when he's having nightmares. But I do have a post already written for the 21 days of Yule over at http://thepaganhousehold.com, so be on the look out for that in December.

Worlds Apart

2011-11-21T20:31:00.001-05:00

I'm sitting here in Leaf's room tonight, listening to the radio and having a bit of time to wind down after a particularly whiney day with Acorn (and no nap, so no break in the whines all day). It's calm here - quiet; the soft click-huff of the vent makes a rhythmic counterpoint to the easy listening station playing over the hospital's TV. The furniture is at least as comfortable as Starbucks (which is to say, not very, but I am starting to think that the rocking chair might work better if I use the chair I'm sitting in as an ottoman).

Most people's reaction to Leaf's illness is shock and horror. They assume we must be falling apart, sobbing in the corner or something. Some of them, hearing the word ventilator, assume this is a death watch.

Others are confused by our child care arrangements - namely, they are horrified that my husband is at work every day, and that Acorn and I are mostly going about our normal routine (or what there is of it - we've had less than a week at home to find our rhythm too, and it's just not there yet). But really, there's nothing to be done here, and no one that Acorn is comfortable staying with, and while taking a day or two off for an acute situation is reasonable, there's no company in the world that gives enough days to sit here for a week or two (we'll be at two weeks Thursday), or a month or more.

It's hard to get across to people that we really *are* at a point where this is just a normal day. Ventilators aren't scary - they are wonderful bits of modern technology that keep my kids alive. We had one at home until just recently, even. I have a resuscitation bag and I know how to use it. I know what all of the meds hanging on Leaf's IV pole do; I have given every breathing treatment they're giving and I know what they do. I understand the basics of the cardiology report, because we've read dozens of them before and seen symptoms and results first hand on a daily basis for years.

Some people think hospital stays are the worst thing ever. We've spent more than a third of our last 3 1/2 years with a child in the NICU - 15 months total. We've got another almost 2 months of hospital stays total for our children, and almost 6 weeks for me. The hospital (this hospital) is literally our second home - we spend more time here than most people spend at their cabins up north (or their vacation homes, for those who aren't here in Michigan).

Some people seem to think that I must need someone to talk to. No offense, but I have people - I have a therapist whom I'm paying a lot of money to...and she thinks I'm just fine. I have other special needs parents who understand, who've been here, who know.....who I can give the whole story to without stopping to translate medical-speak into regular-people terms.

I dunno. Some days I think we're just so far from other parents - on a different planet maybe - that having even a regular conversation is hard.

Does the hospital give multi-child discounts?

2011-11-16T22:49:00.001-05:00

Last night we took Acorn in to the ER, wheezing and coughing even with his breathing treatments. He's staying there again tonight, with hopes to go home tomorrow.

Leaf is just down the hall and around the corner in the PICU. She's still on a ventilator, still sedated, but they're slowly weanng her vent settings.

Too bad they couldn't throw them both in the same room. I moved Leaf's altar back into her room over the weekend (it hadn't all found a home yet as we were still unpacking from moving out of the NICU), but we only have one altar setup for the hospital, and I have two kids there, in two separate rooms.

Oddly, there was already a chaplain in Leaf's room when I arrived the morning she was intubated. She was not yet intubated when I walked in, and in fact I had only stepped off the elevator. I wonder how they know when to show up?

We're finding the regular pediatrics floor somewhat interesting. People don't know us (well, nurses don't know us - it's still mostly the same respiratory therapists that we've worked with since Acorn was born). There's dismay at all the things that have to be done in particular ways for Acorn - they want a compliant kid who they can do anything they want done on command. I guess the'll either learn, or not.

When I said I wanted my family together, I didn't mean in the hospital....

This PICU stuff sucks

2011-11-13T20:41:00.001-05:00

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain

--Frank Herbert, Dune

It has been a long time since I've truely feared anything. Several years back, the request I finally brought to Big Dark & Scary when I thought I was ready for her was, "I cannot continue to live in fear of so many things, please help me." The interesting, and somewhat unexpected, result of that discussion, was that I became aware of what things are worth fearing, which has the side effect of putting me back in control of the fear.

The possibilities here with Leaf? The ways this could go so terribly wrong?

Yeah. Those count as being worth fearing.

But not worth drowning in the fear, which is where I was yesterday. Today is marginally better on that front, even after a 3 am phone call letting me know that they drug the attending physician out of his bed at home to come consult after things again got worse yet again.

I've always liked the Litany Against Fear - it may be the only part of Dune I liked, because I really wasn't fond of any of the Dune novels when I read them in high school, and that's saying a lot for me, given my voracious reading of everything, but particularly sci-fi and fantasy.

And in terms of being mindful and present....it's a good reminder that I can be afraid without losing myself in the fear. That in the end, the fear will pass by, and I'll still be standing here, no matter what happens.

And Back Again

2011-11-12T19:03:00.001-05:00

Leaf wasn't feeling well Wednesday, so we went to the pediatrician. Everyone felt it was just a minor virus, and we could ride it out at home; she was cranky and feverish but otherwise unfazed.

Thursday morning she had a cough, but was in a much better mood. Thursday evening, she was getting progressively congested, so we ran some albuterol, called the pediatrician, and headed to the ER, fully expecting to be admitted for observation.

Friday was calm, but still with a lot of coughing and nebulizers.

Saturday morning, they called to say that she was being put on CPAP, and that they'd put an IV in to give IV steroids instead of oral, and to switch her reflux meds to an IV. We finished up breakfast and I headed that way within an hour of the first call, intending to hang out for the morning and comfort her...

...and my phone rang as I stepped off the 5th floor elevator, with news that they were going to intubate because CPAP wasn't working. She'd been just fine overnight, and things had gone downhill over a 2 hour period from "just fine" to "not good."

So, the good news is I was there. I saw her without the vent, and saw how much more comfortable she is with it. I'm not happy about it, but this is exactly why she was in the PICU to begin with - we knew that if she ran out of reserves, or her illness got worse, things would get messy quickly. We can handle a lot at home, but definitely not intubation.

Have I mentioned our life often feels like an episode of House? This PICU stay is no different.

Her first viral panel was inconclusive - not a big enough sample, which is hard to believe.

Her second panel came back clean....which leaves us all scratching our heads, because everyone was *sure* she had RSV (hey, at least it's not RSV!). The reflux makes us all think she might have aspirated, but then why would she show no signs of pneumonia from the first sign of sickness Wednesday until just now? Additionally, today she stopped peeing, which makes no sense at all, but there was plenty in her bladder.

So....the plan this afternoon was to take blood, urine (via catheter) and secretions they're suctioning from her lungs and culture them to see what comes up. At this point, they have no real clue what the culpret is, and so we wait.

This is not the quiet week at home we were supposed to be having.

An update from the home front

2011-11-09T12:51:00.001-05:00

We did, in fact, make it home on Saturday, though not without some bumps in the road. Who knew that the 2 most common meds preemies leave the NICU with are not available at normal pharmacies? And who would ever think that the hospital's internal pharmacy can't look up insurance card detail in the hospital's system for discharge meds?

Anyway, we're here. We're struggling with reflux, and with a stomach bug that Acorn brought home from somewhere (likely daycare) and shared. Leaf seemed relatively unfazed, but today she's amazingly cranky and getting moreso by the hour. Our most recent feeding appears to be the first in nearly 36 hours that she hasn't spit up (though saying that may jinx me). We started reflux meds yesterday, a very mild one, and I'm hoping it gives us a bit of breathing room.

Leaf often sleeps with her eyes partly open, which is unnerving. Other than the last few hours, she's happy, smiling, and what normal people would call a "good baby" - she doesn't cry much, she sleeps well, she's happy to be held or not, she's great in the car as long as it's moving. In special needs terms, she appears to be socially appropriate, and other than her severely flat head and her torticollis (stiff neck), she looks to me to be on schedule for her adjusted age. The therapists will be here Friday and Sunday to evaluate her for in-home therapy for the winter, and it's our two favorites from Acorn's in-home therapy days, who we will be happy to see again, and who I'm sure will enjoy seeing Acorn again.

We are no where close to finding our rhythm - and we're adding more appointments every time the phone rings. Acorn's last day at daycare is Friday, so that'll add another layer of chaos too. But we'll get there.

...at least, I hope so....