Monday, December 24, 2012

The Organized Trach Mom.

Lots of new trach parents wonder how to organize and store everything at home.

This is how we do it - there are other ways, I'm sure. Our label machine has been an excellent investment, because we label everything - bins, drawers, what clothing goes where, names on equipment that might go with us to the hospital....

This is the view from the couch (futon) in Leaf's room:

As you can (maybe) see, the vent, suction, nebulizer, and other in-use things are on the shelf on one side of the crib. On the other side of the crib is a rolling set of plastic drawers, with labels on each drawer of what goes in the drawer. There's a set of Yaffa Blocks (do they still even make those?) beyond that in the corner for diapers. On top of the drawers, there's a whiteboard calendar with all of her therapy appointments and doctors visits. Under the crib, there's another plastic drawer for vent circuits and spare filters.

Our concentrator is in the hall - tubing runs into the room, around behind all that, to the ventilator, and over the banister and down into the living room. When we move up or downstairs, we switch the tubing at the concentrator.

In her closet, we have these big plastic bins - each has written on the white label what categories of stuff go in them. The funny looking white stuff on the left side is an over-the-door shoe organizer, also with supplies that we use from time to time, but not as often as the things in the rolling drawers.

Here's what we did in Acorn's closet, or at least, here's what's left: more Yaffa Blocks, on the existing closet shelves, and a shelf under the bottom shelf for keeping various supplies too. For a while, the rolling drawers were in here, just out of the right hand edge of the photo, where his new dresser is now.

Really, we found that anything that maximizes space and can be labelled is good. Going up the walls with tall shelves and such saves much needed floor space.

We have a small stash of the most used supplies down in the living room too - suction catheters, saline bullets, gauze, g-tube extension & feeding syringe, and so on. That way we don't have to run upstairs if we need something.

Tuesday, December 18, 2012

The Mixed Blessing of Nursing

Today I find myself thinking of Nurse Phyllis - one of our best and worst nurses ever, who passed away last December. 

In the months before Acorn was decannulated, we all knew she was sick - the hacking cough was unmistakeably Bad News. Clearly not a respiratory illness, even someone without a medical background could tell there was something wrong...and Phyllis had been a nurse for a long time. Acorn was decannulated in August, and we heard in September or October that she was not doing well - the lung cancer we all suspected had metastasized, and was in her brain. About the time we moved Leaf to the other hospital (which happened late at night on the 23rd of December), we heard that Phyllis was gone. She passed peacefully in her sleep, surrounded by family, which was probably about the best anyone in her position could have hoped for.

Off and on I referred to Phyllis as Nurse Crankypants - and she was. Her personality was best described as abrasive. She was overly strict about everything, from how things were cleaned to where people left things and how people fed Acorn. She was extremely upset that we let Acorn play on the floor in the therapy waiting room because who knew what kinds of germs he'd get there? She made no bones about who she liked and who she didn't - you could depend on her to provide an unsolicited assessment of every doctor and therapist we saw.

And yet, for all that....Phyllis was an excellent nurse. An LPN who had first worked in the NICU, she knew complicated kids like no one's business. She knew death too - one of her own children had died in a car accident in his early teens - and she was adamant that it was not happening to anyone on her watch. Her assessment skills were top notch. And I know that I said more than once that if something was to go pear shaped, she was the nurse I hoped was on duty, because even more than Acorn's primary (who, I might add, is also Leaf's primary), Phyllis was the one person I trusted beyond anyone else to handle an emergency, without any questions, and without any missteps.

Beyond that, Acorn loved her. It was not an easy relationship in the beginning, but she was tough in a way that he really responded to.  When she first started here, many of our other nurses were sure that we'd hate her, that she'd be too hard on Acorn, that she wouldn't get him...but more than many others, she saw what he was capable of, not just what he let on.

What made me think of her today was Acorn's appointment with his PMR doctor (which was supposed to be yesterday, but the doctor cancelled, and then should have been today, but Acorn is sick, so now it's the day after Christmas). Our PMR appointments are usually on Mondays, and Monday was one of Phyllis' regular days, so she ended up going to almost all of them with us. She gushed in the car on the way home after that first appointment about how this particular doctor handled Acorn...and she didn't gush about anyone or anything. I was pretty pleased with this doctor as well, but it was nice to have her backing me up on that front - it meant it wasn't just my feeling of, "finally, someone who sees the problems I see and wants to do something about them," but that this doctor really is a special kind of guy.

I don't know how Phyllis and Leaf would have gotten along - Leaf is sensitive in ways Acorn never was, and probably never will be. Still, I think they would have figured something out.

I never thought I'd say this when we first met her, but Phyllis, you're greatly missed.

Wednesday, December 12, 2012

Happy Trachiversary

Today (Wednesday) is Leaf's trachiversary - she has had a trach for a whole year.  It seems longer, and shorter - time is funny that way.

Ironically, tomorrow she goes for her first ever bronchoscopy. They will also be putting tubes in her ears and clipping her upper lip tie.

Only time will tell, but she babbles like crazy, and I think will have fewer speech issues than Acorn. We're going to start weaning her off the vent while sleeping over the next few weeks too. She can crawl up the stairs by herself, but can't get back down - she's ahead of Acorn at this age on a lot of gross motor things, which always startles me.

This is definitely not how I pictured things going....but it's not a bad deal overall. We mostly love our nurses, and we know she's well cared for during the day while we're working. I'm home with the kids some, which I probably wouldn't be if things had gone as smoothly as we'd hoped. It all works out in the end, you know?

Tuesday, December 4, 2012

Yule is coming...

...and again,we are woefully under prepared and quickly running short on time.

I think part of the problem is, as someone I know once pointed out, once you have kids, part of the holidays is making your own traditions rather than necessarily following the traditions of your respective families - and we've spent 2 of the last 4 holiday seasons with a child in the hospital. So really....that's our most traditional thing. Not a good foundation for building a tradition, really - at least, not a tradition anyone really wants to follow.

Another part of the problem is that many traditions this time of year (starting at Halloween for secular and Christian folks, and really all the way back to Lughnassadh - a harvest festival - for Pagan folk, and running all the way through New Years) center around food. When you've got 2 kids with feeding difficulties, normal meals can be pretty darn complicated, and big family feasts even more so.

And, too, having nurses here again is putting a damper on many things. I've got Christian friends with trached kiddos who talk about telling nurses that they're Christian and they play Christian TV shows and sing songs and such, and if that's a problem don't come back...we likely would have very few nurses if we tried that.

Plans for a little altar space and nature table were largely scrapped last winter, though are being revived in another form. Posters and other things never got made while Leaf was in the hospital.

Even putting up a tree is fraught with tension, between 2 cats, a 4 year old who will climb anything, and a 1 1/2 year old who puts everything in her mouth....except solid foods. The fact that we didn't put up a tree Acorn's first holiday at home caused friction with nurses - some were convinced we were Jewish, others were convinced we hated Christians (WTF?), and some just figured it was part of our long list of quirks.

Friday, November 16, 2012

Mini Sensory Bins

Acorn dumping out the money bin
Lately we've been doing a lot of different things with sensory bins. One of our most popular things right now is the mini bins - small containers with sensory activities. As you can see above, coins have been pretty popular (and he loves throwing pennies into fountains too).  We also have a container of rice, and a container that holds a bag of 15 bean soup mix beans:

These are great when we don't have a lot of time to clean up a big mess. Acorn is really into the sorts of bins he can pour and stir and scoop, so we're sticking with those sorts of things for the containers.

Thursday, November 15, 2012

A Piggy Bank for Pagan Kids

Earlier this year, I wrote a little bit about banks and money and Pagan kids.

Today I wanted to share with you the solution I came up with:

a 4-part bank, created from a paper mache box.

Each side of the box is labelled with an element and a purpose for that portion of the bank:

Earth: prosperity - money to put aside for investing, in a way that it can grow, like a plant grows from a seed
Air: thought - money to save for something bigger, something we've thought about wanting and worked towards
Fire: passion - money to spend on things right away, the money that's "burning a hole in our pocket"
Water: compassion - money to give to charity or to give to help people

Inside the box is also divided into 4 parts to keep money separated. 

I'll be posting a tutorial on these over on soon. It was both easier and more difficult to make than I anticipated.

Thursday, November 1, 2012

Under the Sea Sensory Bin

This past week, I dug out the Samhain sensory bin from last year. We hadn't done one in a while - this summer we had the sand and water table outside, which we used on a nearly daily basis when the weather was nice:

But now that it's chilly again (low 40s and rain), we need some indoor options. Especially since we're looking at a likely diagnosis of sensory processing disorder for Acorn  (IEP next week, hopefully with helpful results).

He's been enjoying the rice in the bin this week, and Leaf has been cautious about it, but since it's now November, it's time for a new bin, and I'd had a water theme in mind for quite a while, so here we go.


We have a new bin - this one is clear, and has a latching lid that Acorn can't open.  I'd heard about water beads a while back and thought they would be really neat for a water themed bin, so I started half of the package soaking a few days go. Unfortunately, what looked like a lot of beads turned out to only be about 3/4 of an inch in the bottom of our new bin (and it's smaller than the dishpan I was using before, so it'd've been even less there). Since I'm swapping out bins on my day off, I just added the rest of the package of beads, a few cups of water, and threw the fish and such in on top of them. I made sure to leave a spoon and some cups of various sizes for pouring the beads back and forth.

I expect this will be a challenging texture for both Acorn and Leaf - we'll see how they do, because too challenging might result in a quick change of bins, and I only really have one other theme in mind.

Thursday, October 25, 2012

Plastic tubes saved my kids

A while back I started talking about life with a trach, from a parent's perspective. This is a continuation of those thoughts - life with medically fragile children is complicated, folks.

These are photos of pediatric tracheostomy tubes.

Tracheostomy tubes (trachs) come in a lot of different sizes - sizes for very small babies, and sizes for larger adults. Adult trachs are a little different, and I'm not really familiar with them, so we're going to skip talking about them for now.

There are three basic parts to a trach: the thin curved tube that goes from the skin to the airway, the flanges that sit on the skin, and the hub (larger round part) that attaches to things.

That thin curved part is *tiny* - for my kids, the outer diameter of it is 4 mm (about 5/32" for those who think in English units) - the inner diameter is smaller, and clogs fairly easily. When you or I cough, anything we cough up ends up in our mouths, and we usually swallow it (or spit it out if it's nasty).  We blow our noses to clear them. For a child with a trach, they sometimes need help clearing the mucous out of the tube when they cough, so we have to carry a suction pump and special tubes to put into the trach to suction the goo out.

The flanges that sit on the skin are usually held in place with a collar of some sort - the most common ones now are foam strips with velcro on the ends; the velcro goes through the holes on the flanges and then sticks to the foam. Leaf's skin is super sensitive, so we have to keep a pad of some sort underneath her trach flanges all the time to protect her skin.

The hub end is the business end - vent tubing and speaking valves attach to it. Some trachs have longer tubes before the hub. I know a lot of people like them, but it didn't work well for Leaf, so we're back to our old faithful.

Kid's trachs get changed pretty frequently - a monthly change is pretty much about the longest you can go, and most people are more likely to change on a weekly or every two weeks schedule. Sometimes you have to change more often (usually unexpectedly) if the mucous is too sticky or thick, or if they're having trouble breathing.

And sometimes they pull their own trachs out, either accidentally or on purpose. A trach that's out needs to go back in fairly quickly in most cases - besides the fact that it puts their ability to breathe at risk, the hole (called a stoma) can close up pretty fast. Maybe not all the way closed, but enough that the trach won't go back in. And if your child needed the trach to begin with, a closed stoma means going back to surgery to put the trach back in...probably on an emergency basis.

And since most kids with trachs have some sort of respiratory issue...knowing how to do CPR is important.  I have one lots of those blue bags you see them using on hospital shows to breathe for people, and I know how to use them. I've watched my kids turn blue (Acorn used to turn blue daily), and I've used that resuscitation bag to breathe for them until we can get them breathing on their own again.You can't just breathe through their mouth - you have to breathe through their trach. can't just drop a kid with a trach off at any babysitter's house. You need someone who's trained to do the suctioning and putting trachs back in, and changing out the ties that hold them in place. Insurance companies generally pay for a nurse to take care of children with trachs, but if you hadn't heard, there's a nursing shortage out there. Hospitals pay better than home care, and finding someone who knows what they need to know can be tough.

Family and friends can learn to do all this stuff, just like we did....but most won't (and that seems to be true across the board, from what most trach parents I know have said). It's a lot of responsibility to take on, and a lot of scary possibilities.

But...these little pieces of plastic save lives. Kids with trachs live and grow and thrive, which the vast majority of them wouldn't do without a trach.

Wednesday, October 24, 2012

it's a long road

I find that one of the things that most wears me out (and from reading other parents' stories, it wears on them too) is the constant battle when you have a child who's not quite what you expected to get them the things they need.

The school, the insurance, the evaluators who are deciding what help your child gets, the doctors, the pharmacy, the medical supply company (or companies, since it seems like we're in the minority, only having one company to deal with).....every  one of them will require contact most months, some more than once, and that's without anything going wrong.

And most of those places are only open certain hours - usually less than normal business hours, in fact - and that limits when you can contact them. Very few of ours take email even.

And so it goes, week after week and month after month. Usually, just when you think you're kind of getting the hang of it, something else explodes and you have a dozen or more calls to make again.

It's exhausting.

Saturday, October 13, 2012

Trick or Treating at Our House

Halloween is a complicated celebration for us.

We're Pagan, and we're the kind of Pagans who generally celebrate the 8 "Wheel of the Year" solar holidays - and Samhain (which also falls on the night of October 31) is a big deal. Luckily, in this case, most of the more secular celebrations fall in line with things appropriate to the religious holiday, but it does temper the celebration for me a bit, because it's not just about costumes and candy - it's a serious day, and a day for celebrating, and a celebration of the end. It's the last harvest before the winter, and if you haven't got enough put away to last til spring right now, you're probably going to starve to death (metaphorically, for most of us).

We also have two children with special needs.  Sure, there are plenty of cute costumes for kids like ours (we've seen a slew of wheel chair friendly costumes this year, and one year when Acorn was still on a ventilator, we dressed him as Darth Vader (with Live! Action! Breath! Sounds!).

But Trick or Treating is challenging for some kids. There's a whole script for the event to know, and if your child is slow to pick up new routines, that's hard. If your child doesn't talk, or talks only in circumstances where they're comfortable, or is hard to understand, people you meet while Trick or Treating can be very pushy - after all, they're giving your child candy, so they deserve to hear your child ask for it. There's masks and costumes that can be hard for kids with sensory issues, and anxious kids can worry about the others in costume too.

This year things are further complicated by bedtimes that start at 7 pm. Sunset here is at 6:27 on Halloween this year. Maybe we'll hit a couple of houses. Maybe we'll program "Trick or Treat" and "Thank You" into one of Acorn's speaking devices.

Or maybe we'll just stay home and tell stories of our ancestors while handing out treats. It's not like Acorn or Leaf eat candy anyway.

Tuesday, October 9, 2012

It's all about communication

Of course, I'm still in a writing slump, when I'm in the midst of sorting out communication skills for both kids, and in sorting out how to communicate effectively with all our various therapists and educators. Ironic, no?

Acorn's (possibly temporary) discharge form private PT and OT last spring leaves him with private speech, and a psychologist outside of school (plus everyone at daycare). At school, he has PT, OT, speech, a teacher, and a teachers' aide. That's about 12 people we have to keep in the loop every week.

Leaf has PT, OT, and speech privately, plus all three through early intervention, and a teacher. And then we have the nursing staff (currently totalling 9 people).  That's 16 people.

28 people I have to communicate with every week about my kids - and none of those people are related to them, none of those people are their doctors.

It's no wonder that I don't have a lot of free time, even now that the kids are both in bed around 8 pm most nights. The time that's left is time for this introvert to wind down - time I sorely needed before kids, working full time, which makes it all the more important now, working part time, and communicating with the regular staff, doctors (and their office staffs), insurance companies, and caseworkers.

It's a lot to keep track of.

Sunday, September 23, 2012

Trachs at the Zoo

Kind of a crazy weekend. Mabon was Saturday, and we really haven't done much specific holiday wise.

We intended to take Acorn to see Finding Nemo, but that didn't work out (note to self: research sensory friendly movie program). 

We had a nurse for Leaf all day, and K was going to keep Acorn Saturday night, so we ran some errands and packed him up and drove him to her place. We saw a movie, had dinner, went for a walk, and went to bed.

This morning, we got up and packed Leaf up to go to our first trach families outing - the zoo. Acorn and K met us there. We all had a great time - Acorn rode on the lap of one of the trached adults from the boards on her motorized wheelchair/scooter, and he thought it was the best thing ever.

Wednesday, August 29, 2012

Busy busy busy

It has been a rough month here at Chez Acorn. Everyone's been sick, and either passing the germs back and forth, or not actually getting over the illnesses. Between Acorn and Leaf, there have been 7 pediatrician's visits, 1 vent clinic visit, 1 cardiology visit, 1 ENT visit, 1 referral to a new pulmonologist (which is scheduled for November, but the pediatrician wants to happen sooner), 3 rounds of antibiotics, 1 new inhaler, 3 rounds of oral steroids, 2 steroid shots, and a whole box of albuterol. 

And that's not counting the meds & appointment I got for getting the same sinus infection.

On top of that, Acorn has had 2 different evaulations for assistive technology/alternative & augmentative communication (AAC) devices.  I am meeting with his teacher later this week; she's hoping to move up the timeline that would get him a device sometime in October.  That's not to say that all is hunky-dory with the school; there's still the issue of how they're communicating in the meanwhile, whether he'll use their device, the ignoring our request for a meeting to review the kids' IEPs, and their inability to get the bus schedule right.

We got 2 new nurses, and one has already quit. The rumors about why are pretty funny, but since I'm not supposed to actually know why she doesn't want to work at our house, I won't share here.

We didn't make it to Pagan Pride Day. I'm somewhat bummed by that, but I know that staying home and keeping our snot to ourselves was the best option. I'm hoping to get out to more events next year, and to start talking about travelling a bit more, since we expect Leaf will no longer be sporting a ventilator at some point. I haven't put in any classes for Convocation, and since the deadline is Friday night, I'm guessing I won't actually be putting in anything.  I'm already behind on writing this month, and it's looking like I won't catch up in the next few days.

There *are* some fun things in the works though - I'm planning a couple outings for local trach families, trying again for a Pagan playdate this month, moving most of my ebooks off my own website and into amazon and smashwords for my own sanity, and working on a couple of childrens' books. Leaf is as cute as ever and growing by leaps and bounds, we're getting a vitamix to blenderize part of her feedings (and maybe some of Acorn's too), and we've all spent a lot of time out on the deck, playing in Acorn's sand and water table, so it's all good.

We just keep putting one foot in front of the other, and hope that next month is a little less intense (though with Acorn going back to school starting Wednesday and IEPs and appointments, who knows how it will all play out?

Friday, August 10, 2012

Complex medical needs final exam

In order to survive parenthood with a complicated child, you're gonna need some special skills. This final exam is based on real experiences, not all of them mine.

It is likely that without experience you will fail this test, but that's ok - this special needs parenting gig comes with on the job training (by which I mean sink or swim). The smiles are worth it though.

Question 1: child's pulse ox reads 30 points higher than normal, with no other symptoms. Do you:A. Try re-adjusting pulse ox
B. Administer some sort of pain reliever
C. Call pediatrician
D. Increase oxygen
E. Go to ER

Question 2: your nurse for the night was supposed to arrive 15 minutes ago and hasn't called off yet. What do you do?
A. Call agency to complain (again)
B. Start praying because you haven't had a nurse any of the last 4 nights and you desperately need sleep
C. Know not to bother checking the schedule because Nurse X is always late (but has never missed a shift) so it's probably just her night

Question 3: your child has "loose stools" as they say due to being on their 2nd antibiotic in 10 days for an infection that won't clear. His diaper comes off while still inside his onesie, resulted in him being covered in poop from toes to armpits. Do you:
A. Pass out from the stench
B. Strip naked & carry child into the shower, figuring you can keep the water out of his trach if you're careful
C. Leave a tub full of toys for the nurse to clean - she needs something to keep her awake anyway
D. Change vent circuit rather than trying to clean corrugated tubing

Question 3: your child is sick. Do you:
A. Put on a movie to help them feel better
B. Refuse to put on a movie because they will have a meltdown even if you put in the movie they ask for

Question 4: it is IEP time. What percentage of the things agreed to (on tape) will actually be implemented?
A. 100%
B. 75%
C. 50%
D. Hahahahahahaha! OMG you fell for that stuff they said?
E. Depends on how much you're paying your advocate

Question 5: your child is sick. How long will it take you to get a doctor to see them?
A. Within a day
B. Sometime this week
C. They're now (August) scheduling appointments for January
D. Depends on how crowded the ER is

Question 6: you catch your night nurse sleeping. Do you:
A. Fire her on the spot
B. Tell her not to let it happen again and then set your alarm so you can check
C. Tell agency to warn her
D. Nothing, because you're already short a night nurse and how would you manage with one less?

Question 7: your pediatrician tells you to go to the ER. What happens?
A. Chest x-ray and they send you home
B. Admitted to PICU

1. A, B, or D
2. Any answer is acceptable
3. You're screwed either way. Good luck.
4. I'm going with E
5. Depends on the doctor, but it's probably not today.
6. Depends on how many other times you've caught this nurse sleeping.
7. Whichever you think they should do, the hospital will do the opposite

Tuesday, August 7, 2012

Communication is Key

It's getting to be IEP (Individualized Education Plan) season around here again. I probably won't be posting all that much up front about it - this time around we have an advocate because of all the problems there have been in implementing Acorn's plan this past school year (which have spilled over into the summer session too). And Leaf's IEP is really only marginally better, though the constraints on Early Intervention suggest to me that there isn't as much room for improvement there.

One of our key concerns for both children, given their medical history, is communication.

Acorn says less than a dozen words - and many of those, you have to know him to understand.

We sign at home. Not fluent ASL, but something akin to SEE (signed exact English) - we sign the words we know while we're saying them. I counted last week - Acorn uses about 4 dozen signs consistently, another 3 dozen or so inconsistently (or they're newly demonstrated). Our guess is that he actually understands several hundred.

It's not hard to imagine that Leaf too will be fairly adept at signing, since we already sign with her and around her and expose her to it all the time.

Our school district has expressed concerns about this, because in the view of those we've worked with thus far, sign language of any sort is "non-functional" because other people can't understand it unless they know it. They would rather Acorn use a communication device - an electronic device that says things when you press buttons (or, as many of the newer ones are, an electronic touch pad with configurable screens where touching the images makes it say things).

They've supposedly used the low tech version of this -  PECS (Picture Exchange Communication Symbols) cards - in the classroom, but have only documented getting him to use one card thus far.

We really don't much care either way - we suspect that Acorn and Leaf will find their own mix of using any or all of the above, along with verbal speech, depending on the situation at hand, until such time as they're fluent enough in English to make it their primary (but maybe not only) communication mode.

This week we had a private evaluation for a communication device; the school is supposed to be starting their evaluation (finally) this week. I'm not sure what either evaluation will recommend (though I've heard that the school's will likely recommend one specific piece of equipment because that's who they're contracted with). But among the verbal suggestions from our evaluation last week was that we needed to work with Acorn on getting the idea that he can tell us what he wants by pressing buttons or pointing at pictures. And another was to use the same sorts of pictures to build him a schedule that he can look at and point to, in the vein of "do this next."

So...we've been playing with our own equipment and some free and low-cost communication apps for Android. I'm making our own set of PECS cards. I've spent a lot of time looking at how others use things like PECS with non-verbal children. There are foods and holidays and articles of clothing, toys and feelings and medical cards too - just about anything you can think of.

In a lot of cases, specific sets of cards are used in specific circumstances to help the child work through what they need to do. For example, a bedtime set might include taking a bath, putting on pajamas, brushing teeth, combing hair, washing face, going to the bathroom, saying prayers, and sleep. We saw one set of 4, with a specific type of communication device, that sang "Itsy Bitsy Spider" one line at a time as you pushed the buttons.

And that got me to thinking (yes, I do get all the way back around to being a Pagan parent here)....what sorts of cards would we have for a ritual? or for going to a festival? Could we do chants this way? Prayers? How would we describe what we're doing in a two inch by two inch square?

Thursday, August 2, 2012

"Forcing" religion on kids?

A lot of times, the statement is made in Pagan circles that parents are not teaching their children their faith because they don't want to force their child to believe something....that they felt like religion was forced on them in their childhoods, and they don't want that for their children.

I find myself thinking that this is a false dichotomy.

Many monotheist "our way is the only way" faiths teach from that perspective....and a lot of us who came from a faith like that, from families that insisted on doing things their way, probably remember all the questions in our heads, the things that didn't sit right, the things that were just nonsensical to us. And if you were a kid like me, you remember the way you learned that some questions are just not meant to be asked....the audacity to ask things that were "inappropriate" was met with everything from shame and ridicule (in my case) to outright violence (in cases I know of).

Change is seen as bad for many of these folks - seriously, I remember the drama when the head organization of the church of my childhood produced a "new" hymnal.  20 years later, there was still a division between churches using the "old" hymnals and the "new" ones....and there probably still is to this day.

Pagan faiths are different. Categorically, qualitatively different. Worlds apart.

We're not tied to one specific way of worship, to the same songs or motions or actions every week. If a particular God or Goddess isn't really our cup of tea, we don't worship/interact/work with them much, if at all. There are few things that are "my way or the highway" sorts of deals, even within a specific tradition or group - and even in the most well organized groups, someone who says, "we can only do X for this holiday" (or God or ritual or whatever) is likely to find themselves either thrown out of the group, or with much of the existing group leaving for greener pastures.

While I suppose it's possible for us to try to shove a very specific Pagan worldview down our children's throats, I have yet to meet a Pagan who'd actually do it the way that most monotheist families seem to do - the polytheist/pantheist/panentheist/henotheist/archetypal sorts of relationships we have with Deity seem to, by their very nature, preclude that behavior.

That difference alone means that even teaching our children our own personal take on religion won't make them feel that our way is the only way, and that not doing it our way makes them a bad person. There is much less focus on fitting in with the group and following group-think as the way to get ahead. There's no shame in moving to a different faith, or even a different "congretation" within the same faith.

Because, when you get right down to it, you can't force a child believe anything - and I think those of us who came from a more forced background know this at heart, because so many of us don't believe those things we were taught. You can encourage, you can teach your way, you can bribe or threaten or cajole, but you can't reach into their little brains and flip the switches. They figure that out for themselves, and then remember how we as parents approached it, and that colors their views as they grow.

So....share with your children the things that bring you joy and peace. Show them your daily and weekly and monthly practice. Let them know that there are other options out there, and explore when they're ready to do so. And worry less about being like your parents were, because you've already stepped outside of the worldview that allowed that behavior in the first place.

Tuesday, July 31, 2012

What it's Really Like Down Here in the Trenches

Support groups are funny things. Parents of kids with a specific condition use them to talk about what's going on in their kids' lives - the good, the bad, and the ugly. Several times in recent months, I've seen professionals on the other side of the same condition (ie, the doctors, nurses, and therapists that work with our kids) on such support groups get upset by the things parents say about other professionals that we work with. They often make judgements and assumptions about things like quality of life for our families and our kids, based only on the small sample they see on these groups.

I'd like to think most of them actually know that there are good and bad people in every field. I'd like to think most of them realize that hospitals and the real world are two different beasts - that their experiences in the hospital or clinic are nothing like our experiences at home.  But clearly, I'd be expecting too much, based on some of the things I've read lately.

To that end, I want to share this list of things for those medical people who work with families with kids with trachs, about how different it really is out here vs the way they teach it in the hospitals. I've asked several of the groups I'm on to help build this list, and I'm so grateful for the help of other trach moms to put this together.

1. Hospitals teach that you should always have 2 people to do a trach tie change or to change a trach.

So....if my kid pukes and I'm home alone with her (or a nurse is home alone with her), and her ties are soaked, we should just leave her soaking in puke until someone else gets home? What if she plugs her trach - are we supposed to stand by and watch her turn blue, hoping that someone comes home soon? 

It'd be far better to teach people how to do it by themselves, while teaching how much easier and safer it is with two people.

2. Hospitals like to threaten parents when it comes to nursing. They say "you have to have nursing or you can't go home" or even "you have to have 24/7 nursing or we'll call CPS" (or whatever your local children's protection/welfare agency is).

Once you're home, nursing agencies don't always fill every shift. If you fire someone for any reason - whether it's that you don't like them, or that they nearly killed your child, you're likely going to have that shift open for some amount of time.

Talking to people around the country, it seems like most medicaid plans allow for 84 hours of nursing a week (12 hours a day, spread over the week). We're lucky - our insurance provides 126 hours a week. But that's still not actually enough to be 24/7, so it's not like getting approved for what the doctors want is realistic, much less filling all those shifts.

3. Another thing on nursing: hospitals have a process for interviewing and hiring nurses.

Anyone who works with a group of people knows that even with that process, some people are better at their jobs than others, no matter what the field. We get good nurses and we get terrible nurses - I don't know what the ratio is at hospitals when they interview, but out here in the real world it seems to run about 50/50. We have people who don't show up for shifts, people who show up late...and at any other job, those things would get them fired, but when I fire a nurse at my house, the agency moves them to another case.

4. Sterile technique.

To be fair, only one of our 3 hospitals teaches it this way, but there's no way to do sterile technique in the middle of a playground. 

Sterile technique requires a new catheter for every if you have a kid who gets suctioned once an hour, which is not uncommon (24 catheters a day x 30 days in a month = 720 catheters) but only get 150 catheters a month (which we do), you're screwed. And a lot of insurance companies are not as generous as ours when it comes to handing out catheters.

5. Hospitals teach that you must have someone awake with your child all the time.

Did you see that statement up there about how not all nursing shifts are filled? So...let's say you have 4 days with no nursing, and one of the adults works full time (assuming a 2 adult household with everyone trained in trach management) do you stay awake at night and work or take care of your child during the day? Or what if you're a single parent?

A nurse would never be asked to work that kind of shift with no breaks and no sleep, and yet parents do it all the time.

6. We're all told to never drive in a vehicle without someone sitting in the back seat with our child.

Right. See that about not filling every shift, and about how most people actually get less than half the hours in a week at most? How do you take your child to doctor or therapist appointments if you can't travel alone but don't have a nurse that day? How do you pick up your other children from school?

Not that every child is stable enough to drive that way, but it's a risk/benefit discussion that parents have to figure out for themselves.There are "safer" ways (driving on surface streets, driving short distances, keeping pulse ox on in a place where the parent can see it), but all in all, we have to live our lives.

7. Medical supply companies (most of them, at any rate) lie.

In a hospital, there is a seemingly endless supply of supplies - nurses use lots of everything, without fear of running out. Doctors tell you to do "x" without realizing that you're not going to have enough supples at home to do it that way.

At home, it's different. "Oh, your insurance only allows 1 pulse ox probe a year" is a good one - pulse ox probes are not billable, they're a part of having a working pulse they're required to provide them if your insurance is paying for the oximeter.

Or they say you can only have 10 trach ties a month, when it turns out that your insurance allows 40 and medicaid allows 30, and the doctor says to change them every day, or more often if needed. So...30 days in a month, with a kid who pukes daily and gets their ties covered in slime = at least 60 ties....if I'm told I can only have 10, what do I do?

8. Doctors don't have new nurses who walk in to the hospital who declare that they don't like the way the room is organized or the way the doctor wants the patient cared for, what medications the child is on, how the child is dressed, what tools the doctor uses in the OR, or any of those things. But I think all of us with home nursing have had nurses like that. We've had nurses uncomfortable with Acorn needing to be suctioned. We've had nurses get upset when kids vomit. We've had nurses refuse to suction in the car, because it's not a bed. Really.

There's plenty more...I've been sitting on this post for a while now, but having oriented several new nurses lately, it's come to the forefront again, and I really think more understanding of the differences between home and hospital is needed.  Did I miss anything?

Monday, July 23, 2012

The intersection of Pagan kids and the mainstream world

We're generally picky about the movies we get for Acorn, but he has a lot of adults in his life besides us who buy things for him. Somewhere in the last couple of years, he received a copy of Here Comes Peter Cottontail (affiliate link), the Rankin and Bass stop-motion tale of how Peter became the chief Easter bunny after screwing it up the first time.  I am sure that before this DVD, I had never seen this movie - I'd have remembered this (it's not my favorite movie of theirs; the story really is kind of obnoxious. Plus it gives the impression that the movie  would probably be better if one was on drugs, much like Willy Wonka and the Chocolate Factory - the Gene Wilder version - which was released the same year.)

We've watched this movie dozens of times, but this morning I was struck by something:

I wonder what Acorn really thinks of this movie. Will he one day ask us why we don't celebrate Easter? Will it bother him that our Easter isn't like what the movie shows? Or that his friends celebrate different holidays? I so often wonder what is going on inside his head these days, but it'll be challenging in a different way to figure out how to answer those sorts of questions.

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 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 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, 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?

Published with Blogger-droid v2.0.6

Friday, June 8, 2012

Your MoonDay School Adventure Giveaway

I'm giving away a 6 month membership to - 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.

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.

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.

Thursday, May 31, 2012

The Things I Want

I think what I'm feeling right now is a dramatic lack of community. 

Being an introvert, you know it's bad when I say I want to be around people.

We have Acorn in SpiralScouts, and in daycare, and in special ed preschool (or, as they call it, the Early Childhood Program).

Preschool and daycare are working on things like early writing skills and cutting and gluing and taking turns...and on language. We've seen dramatic improvements at daycare (he eats for them!) and we've seen some small things, like putting his coat on and taking it off, from school.

SpiralScouts as implemented here is fairly secular but eco-friendly....but it's a struggle for Acorn, partly because of where he (in terms of maturity and language skills) is, partly because the way our group operates isn't quite preschool and very young school-age kid friendly, and partly because SpiralScouts isn't really set up that well for the youngest kids. And it's hard for him to make friends and build a community when you can't actually engage him in the activities.

Leaf has nurses and therapists. They play with her. But as we found with Acorn, there will come a time where they need to do more than make faces at her and hand her toys, like coloring and singing the ABCs, and that was a struggle to get them to do. I don't know about the newest nurse who starts in a week, but all the rest of our nurses are Christian (all but one I'm sure is Catholic, in fact). So it's not like I will likely get them to read mythology to her, or sing Pagan chants.

I've been working on getting a Pagan playgroup going locally, because (a) I think it's important that they know other kids who are Pagan, and (b) it's hard enough to find people we have things in common with, so I might as well start with a pretty specific category of people. It's been slow going, finding a time more than 2 of us can gather, but eventually I think we'll figure it out.

But right now, really, I wish there was a really good daycare/preschool with a Pagan-oriented curriculum, or a Pagan kids group that we could participate in, or something along those lines. In what seems like another lifetime, we were involved in a failed attempt at creating a Pagan community center here, and I wish we'd been successful, because there would be a community already, instead of trying to build one from scratch right now.

Saturday, May 26, 2012

Ankh Giveaway

Giving away:  Baby's First Ankh

This is from my Baby's First Collection on - a tiny 10 mm ankh, on a ribbon of pink, blue, lavender, or yellow, mounted on a presentation card.

The quote on the presentation card is from Peter Pan:

When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. And now when every new baby is born its first laugh becomes a fairy.

Recommended as a Wiccaning gift or baby shower gift; use common sense when letting infants and smaller children wear jewelry, as this ankh is a choking hazard. May be strung on a necklace when the child is older.

Funny, I realized I have no ankh photos, only pentacles, but here's the pentacle version of this item:

There are several opportunities to get extra entries for this contest, so use the Rafflecopter app below to enter. Contest ends at 12:01 am on Friday June 1. Winner will be notified that day by email, and must respond within 4 days or I will choose another winner.

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.

Friday, May 25, 2012

Birthday Bash - Happy Birthday Leaf

Today my baby girl turns one.

Smiley girl, you were not supposed to be born yet - and yet you were, and we are sorting it out day by day. Thanks to you, we have now spent every personal holiday (like our wedding anniversary) along with every major holiday (like Memorial Day) in the hospital - though, to be fair, we had your brother's help on that front.

May 25, 2011

May 17, 2012, Eating Dried Mangos

Happy birthday, little one!

In honor of Leaf's birthday today, and Acorn's birthday in a short 20 days, I'll be hosting three contests over the next three weeks, starting tomorrow - so be on the lookout for it!

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.

Published with Blogger-droid v2.0.4

Friday, May 18, 2012

T-minus 8 days...

It's been a really crazy few weeks here. We're getting the hang of Acorn's new therapy schedule. Leaf has new therapists from early intervention. Work has been much like the Lemony Snicket A Series of Unfortunate Events books. Everyone has had various doctors appointments. Acorn ended up with a sinus infection, which turned into an ear infection even with tubes (he has a huge blob of ear wax either completely covering the tubei n one ear, or the tube fell out and the wax is where it should be) and then he reacted to the antibiotic he was given, which meant two days at home with lots of icky diapers.

And speaking of just over a week, we're embarking on a potty learning adventure.

We've done a lot of work with Acorn on potty skills, and as recently as early last fall he would go when prompted (he wouldn't ask, and he was still working on clothing management, but put him on his potty chair and he'd go right in it). Then came the November of doom, and after his hospital stay, he wouldn't even sit on the potty.

It's not like the standard bribes work. He hates stickers. He has put an m&m in his mouth (after months of work) but spit it back out. Cheerios are a primary food source, so putting them in the toilet may result in him reaching in to pick them up and eat them - and reaching in is already a problem, because he loves playing in water.

We've finally gotten him to sit (on the big-people toilet even). And he's gone a few times. But over Memorial Day weekend, our plan is to dive right in and try going diaperless and going on a schedule. In the past, I've thought that naked time wouldn't help - it's never bothered him to go on the floor, in the bath tub, or anywhere else. But maybe 3 days of concentrated effort will at least get us back to being able to stay dry if we're on a schedule.

If not, we're in trouble anyway - he has great bladder control, and a prefold no longer holds a whole pee.

Wish us luck!

Wednesday, May 9, 2012

almost wordless wednesday

All acts of love & pleasure are her rituals says the Charge of the Goddess. Even swinging.

Published with Blogger-droid v2.0.4

Wednesday, May 2, 2012

Pagan coming out day

It's International Pagan Coming Out Day. I'm always torn about this sort of thing - I'm pretty much out everywhere, but I don't often walk up to people & say, "hey, I'm Pagan!" without some context.

That said, the more "normal" folks who step up & tell people they're Pagan, the better off we all are, because it means we're less likely to be marginalized by the majority.

I've been places where being Pagan was not safe. I've been in lots of situations where it wasn't comfortable. For those who are in those situations, and for myself, I'm  out as best as I can be, in hopes that a time comes where it's not an issue for anyone.

Published with Blogger-droid v2.0.4

Tuesday, May 1, 2012

What Kind of Parent Are You

I know it's been kind of quiet over here lately. I've been working on a new project, writing some guest posts, and generally trying to keep my head above water amongst all the appointments and therapies.

It's a funny thing - clearly, I'm both a Pagan parent, and a parent of children with special needs, but a lot of times....I'm just a mom. We get the children ready in the mornings, make sure they're fed and diapered, try to figure out what to do about potty training, play on the swings, and bathe and pajama and do bedtime, just like everyone else.

And some days, that feels like it's plenty - like just being a mom doesn't leave time for being a special needs mom or a Pagan mom. It's something I've been thinking about a lot lately.

Some people think that Pagan parenting means teaching your child to write in the Enochian alphabet with the same ease they write in English (and frankly, if I was going to go that route, I'd go with runes - a high school friend used to take class notes in German using runic characters, just to mess with teachers, and that's way more my style anyway). Some think it's taking children to Pagan festivals. Some think it's having a little altar, or reading mythology or having a preschooler who knows more Pagan chants than typical preschool songs.

I don't know that it's any of those or none of those.....but I think there has to be a balance. A balance of living in the mundane world and teaching about the Gods and the energies around us.

And right now? Balance is not our strong point here. There's too many appointments.


This past weekend I had 2 guest posts: 

I also started a project that may or may not help me out on this search for balance. Actually, it probably won't help with balance in the short term, but will likely help in the long term with adding Pagan things into our day. I'm starting a website for Moon school lessons and plans for children's workshops for festivals. The website isn't up yet, but you can read more and get updates on our facebook page:

Sunday, April 22, 2012


Last night, as bedtime again took more than an hour, I found myself getting irritable about the time it takes, and how many other things I could be getting done.

 But laying there in the dark, waiting for Acorn to sleep, I had a realization: this is time with him I can never get back.

One day he'll be old enough that he won't want someone to stay with him while he goes to sleep.
One day he won't need to have someone snuggling with him to feel safe enough to drift off.
One day he'll take showers without supervision, and put his pajamas on without help.
One day he'll move out and sleep somewhere else.

He already seems so big - especially in comparison to Leaf. I remember when he fit in some of these clothes; he was still in the hospital when he wore some of these. And sometimes it feels like he's just growing up too fast, even as we struggle with things he can't do yet.

So, again, a reminder to be mindful - to be present - because this moment right here is the only now I've got.

Tuesday, April 10, 2012

For Sensitive Kids, Less Is More

Welcome to the April 2012 Carnival of Natural Parenting: Kids and Personal Care

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants have shared stories, tips, and struggles relating to their children's personal care choices.


Leaf and Acorn both have eczema, though Leaf's is far worse. We discovered this during her recent hospitalization, where the second hospital had a policy that every child be bathed every day by a nurse so they could inspect for skin issues.

The daily lathering in soap tore up her skin. She already had blisters from the EKG leads and raw spots from taping down her IVs, but the washing was just too much.

At home, we reserve soap on the kids for days when they're actually dirty - not just every day. Even us adults don't bathe every day if we haven't gotten all sweaty, because it dries out our skin too. Acorn loves playing in water, so every other day or so we let him sit in the tub, with just plain water, and let him play and splash.

They don't smell, so clearly they're just fine without so much soap. And less washing has cleared up all but the worst of Leaf's eczema spots without any other treatment.

Hair, too, gets washed less often here than most families. I have very curly hair, and curls tend to be dry at the ends because the natural scalp oils don't flow down the hair shaft so easily. While Acorn's hair is not as curly as mine, it still is super fine and somewhat curly:

5 am in the ER, but still curly, and never been cut

While I've done conditioner only routines and apple cider vinegar and baking soda routines, and currently am using solid shampoo bars....what's working for Acorn these days is just to not wash his hair that often. We wash it about as often as we soap the rest of him - maybe once a month - and adding just a tiny speck of a natural conditioner to help manage fly-aways.



Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Code Name: Mama and Hobo Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be live and updated by afternoon April 10 with all the carnival links.)