Tuesday, December 29, 2009

A new project

I have a new little writing project, the Pagan Mother's Prayer Book. It's an online prayer book geared towards Pagan moms (as if you couldn't figure that out by the title), with audience participation encouraged.

Feel free to stop by over there and check it out.

We're travelling to my brother's wedding this weekend; I'll either post a lot more about the crazy family, or a lot less.

Thursday, December 17, 2009

when anxiety is too much

I haven't really said much on this topic yet, but I have lived with depression most of my life, and for me, that comes with the added complication of an anxiety disorder. While I've been on meds in the past, right now, I'm not, and I am working hard to keep it that way, because I'm just not me when I'm on them.

The week after Thanksgiving, I went to Mexico on business.

I didn't want to go - I have a strong dislike for being in places where I don't speak the language, few people speak any language I know, and I am obviously not safe going about my business.


Having a propensity to extreme anxiety, along with a hefty dose of social anxiety, makes travel just that much worse. My therapist and I are working on better ways to manange the anxiety. I'm much better now than a year ago at catching myself before it spirals completely out of control, but if I don't manage to head it off, there's not much to do but ride it out.
And right now, Mexico is a prime example of failing that safety requirement, and a place where, if there wasn't anxiety about going, you probably ought to think about therapy. I was told not to leave my hotel, and the engineering manager drove me back and forth because it wasn't safe to take a taxi, and wasn't really safe for me to be driving either. We drove through military checkpoints with lots of guys in camo, carrying large weapons.

To add to that, 2 trach kids (one on the message board I read, and one here local who shared nurses with us) passed away the week of Thanksgiving.

Although Acorn isn't as dependent on his trach and vent and such as he has been - we haven't had an episode of turning blue since shortly after he had RSV in May, and we have been steadily weaning him off the vent since September - it's hard not to think that this sort of thing could happen to him.  We've seen him stop breathing - we've used the blue bag like paramedics use on TV to breathe for him - for a while there, it was an almost daily occurrence. 

All in all, a perfect storm, anxiety wise. It was all I could do that morning to kiss him goodbye and walk out of the house, because a part of me truely believed that my plane would crash or that he'd die and I wouldn't know until I got home.

Though I think travel would still be an issue even without Acorn's medical issues, the whole medically fragile child bit certainly ratchets the anxiety up by an order of magnitude.

Once in a while, I just wish things were "normal" around here, but I'm not even sure I know what normal is anymore.

Sunday, December 13, 2009

different families, different philosophies

One of my much younger cousins has a baby only a few months younger than Acorn. She married the father of the baby, who is my age...which frankly makes the whole relationship feel a little skeevy, as far as I'm concerned. At any rate, this cousin of mine is an only child, and her parents are apparently deeply involved in parening the little girl.

We definitely don't see eye to eye on parenting methods, based on what I've seen of their interactions with my cousin when we were younger.

We're heading to my brother's wedding in January. We're taking Acorn - we've spent too many nights leaving him in the hospital to be ready to leave him somewhere now, even if it's with nurses all weekend, so we've been putting together all the crazy details needed to take him along. The happy couple did not say no children, and they are aware that we cannot leave Acorn with anyone who isn't trained, so there's no issue, right?

Except....last night I got a call from my uncle.

He wanted to know what we were doing with Acorn during the reception.

Before I go any further, in that context I really hate the phrase "doing with" - it makes it sound like your child is a toy to be put on the shelf when it's inconvenient to take them wherever you're going.

I called back a little later to find out what they were getting at. It seems that they were getting at was that they (my aunt and uncle, not the baby's parents) were planning to split shifts caring for her - one would miss the wedding, and the other would miss the reception. And they were sort of hoping that we'd be interested in taking one of those shifts with their little girl, if we were going to be skipping something with Acorn anyway. And that if we thought he'd stay with them, we were welcome to leave him - not that they know anything about his medical care, really, but you know, it's polite to offer to trade off if we were going to watch their granddaughter.

But....beside the fact that they're not at all knowledgeable enough to sit with Acorn for an evening, they're not the kind of people I'd leave him with, even if there weren't medical concerns.

I generally figure most children who are taken everywhere learn to behave appropriately - if you don't expose them to these things, how will they learn? We very rarely use the word "no" - it''s too vague, and too easy to tune out - no was their favorite word.

And, in Pagan terms....they don't shield. Ever. Acorn really isn't old enough to do that on his own, so this should be interesting.

Monday, December 7, 2009

A Pagan source of help for NICU families

As I've mentioned, Acorn spent 291 days in the NICU. While we were there, I read a lot of online things about ways to help friends/family in the NICU, usually with a list of helpful little things to get them through their stay

Side note: realistically, we got none of the typical list of things to help NICU parents - gift cards, disposable cameras, lotions, etc that are suggested - luckily for us, we live 5 miles from the hospital, but not going there every day sure did make a dent in our gas expenditures, and being able to pack in meals on days we stayed all day helped, but we were usually grabbing dinner from a restaurant on our way there.

We were the only Pagan family that we knew of in all the time we were in the NICU. Some of our NICU neighbors were very vociferous about their faith, including the parents who tried to convert nurses, and who wouldn't get out of the way for nurses to care for their little boy because they were too busy praying over him and laying on hands (I've recently learned that he came home with a trach - his early days were so very much like Acorn was at that size, and in the end, he's still much like Acorn, equipment and all, even down to sharing a nurse).

In the beginning, I was wary of taking things in that might raise eyebrows - not that I'm not fairly out about my beliefs, but that we were so dependent on these people for Acorn's care, I didn't want to inadvertently cause anyone's prejudices to impact him. After seeing the other families with their crosses on the wall and notes that Jesus loved their child...I slowly relaxed a little, and even got so far as discussing battery powered LED candles and stuffed animals to represent the quarters on the little shelf under Acorn's status board.

We know there are no Pagan chaplains at the hospital - several years ago, I was their only contact on file, and I'm sure they've long since thrown out my info. The couple of times the chaplains were there when I was there, they were very nice, but just not really very helpful - though the one that showed up in the trauma unit the morning BigOak got hit by the car knew Acorn immediately, and mentioned how cute he was, and how they all hoped he could go home soon.

There are a couple of organizations out there that make up care packages for NICU families - one that's pretty secular in their outlook, and several run by very devout Christians. We knew of none of these when we were in the NICU, and some of them we probably wouldn't have contacted. We truely felt that, even as long as we were there, it could have been far far worse for us - it could have been an hour drive. Acorn could have had some permanent disability or brain damage. We saw other children who didn't make it home at all....and in the grand scheme of things, a ventilator wasn't such a bad deal, you know?

We've been giving gift bags to our home NICU for the tiniest babies, like Acorn. We include a onesie or other baby clothing (sized for preemies 2 lbs and under), a hat, and usually a stuffed animal (Acorn's grandma has been making these for us). We've talked about doing blankies too, but just haven't had the time to find a reasonable source.

This weekend, however, I found a new Pagan Parenting website, paganparenting.org.  One of their first outreach projects is Operation Brighid's Arms, which provides care packages to Pagan families with preemies and other ill infants in the NICU. This is fabulous, and I wish they'd been doing this sort of thing when we were in the NICU. We'll be putting together a box of donations for them, and I hope some of you will too.

Tuesday, November 24, 2009

On spanking...

I've never really been for or against spanking. It's seemed to me that if used, it ought to be a last-ditch effort, not a first response. And we're striving to raise Acorn in a way that builds mutual respect...and spanking seems, to me, to have little space for respect. We wouldn't strike an adult under similar circumstances - that would be assault. As adults, we're expected to use our words and talk about why we're unhappy with the other person's actions; modeling this for children (within limits) is the best way for them to learn as well.

I ran across a very moving quote today, and I felt like I needed to share it with you - Astrid Lindgren, who wrote Pippi Longstocking, received a peace prize for her work, and said in her acceptance speech:

When I was about 20 years old, I met an old pastor's wife who told me that when she was young and had her first child, she didn't believe in striking children, although spanking kids with a switch pulled from a tree was standard punishment at the time. But one day when her son was four or five, he did something that she felt warranted a spanking - the first of his life. And she told him that he would have to go outside and find a switch for her to hit him with. The boy was gone a long time. Eventually he came back crying and said: "Mama, I couldn't find a switch, but here's a rock that you can throw at me."

All of a sudden the mother understood how the situation felt from the child's point of view: that if my mother wants to hurt me, then it makes no difference what she does it with; she might as well do it with a stone. And the mother took the boy onto her lap and they both cried. Then she laid the rock on a shelf in the kitchen to remind herself forever: never violence.


And that is something I think everyone should keep in mind. Because violence begins in the nursery - one can raise children into violence.

Saturday, November 21, 2009

Thanksgiving

Holidays with the in-laws have been stressful for a while, and Acorn just complicates that.

They never want to plan until the last minute, and then they want to tell us what to bring, rather than letting us make suggestions based on what's available. It's always expected that we will come to them. And no matter what they say they want us to bring, someone is unhappy. If one wants pumpkin pie (or pecan, or cherry, or apple, or peach or chocolate, or butterscotch), someone else doesn't eat it - and there's never any appreciation for homemade food.

I should point out that other than holidays, most of the time we get together with them, we eat out. Lately, we're not eating out much at all; eating in is better for us and less expensive, and the concept of cooking is a bit of a stretch for them most of the time.

I love to cook. I would happily cook the entire dinner for them, no strings attached, but that's not how they operate.

Last year took the cake, as far as insanity goes. They called the Monday before Turkey Day, and wanted us to bring rolls and dessert. 

Keep in mind, Acorn had been in the hospital for 5.5 months, and had just gotten his trach 2 weeks before. Big Oak still wasn't getting around on his broken leg all that well, and still wasn't allowed to drive. We were generally failing at keeping things together - we ate out because there were no groceries; there was only clean laundry because Big Oak's broken leg had prompted  me to give in and hire a housekeeper, but she'd only been working for us about 3 or 4 weeks. We were never home.

I suggested that we could bring stuffing instead - I knew we had everything on hand for that. But apparently that just wouldn't do, grandma wanted to make *her* stuffing....which it turns out is a box of turkey flavored store brand stuffing, mixed with a box of chicken flavored store brand stuffing.

And then....they wanted us to come out to their place, a little over an hour away, around noon, eat, hang out, and eat again.

Without Acorn.

Without even seeing him.

Because, you know, it's entirely normal to leave family members alone in hospitals on holidays, without even planning to visit them. Just because they're too small to remember doesn't really have a bearing on the situation.

*sigh*

At least this year, dessert isn't on the list of things we're supposed to bring. Last Easter, they were awed by my fresh, still warm from the machine, home made bread. Just that, salad, and the baby is all they want us to bring.

It usually means bringing my A-game as far as grounding and shielding are concerned too, but we won't mention that to them :)

Tuesday, November 17, 2009

Monday, November 16, 2009

13 is Acorn's Lucky Number

Most poeple will tell you that a Friday the 13th is an unlucky day - ladders fall on your head, mirrors break and the shards jump out and try to slash your throat, black cats trip you in the dark, and then Jason and Michael Meyers come and kill you in your sleep.

Looking back though, 13 was Acorn's lucky number, and Friday the 13th was the day we both cheated death.

When I was 21 weeks pregnant, I started developing blood pressure issues in an otherwise normal, if a bit over-dosed-with-morning-sickness pregnancy. At 26 weeks, a trip to triage to adjust my meds became an inpatient admit "for the duration"....which I was told was likely to be 2 weeks or less. We were in Labor & Delivery room 13, in a hospital on 13 Mile Road.

Sure enough, at exactly 27 weeks I developed pre-eclampsia, and we induced labor. About 8 hours later, I started to develop HELLP syndrome, and we left labor and delivery room 13 for the OR. At 6:14 am (we belive the time was 6:13, since all the clocks in the building showed a different time), Acorn was born by emergency c-section. It took a couple minutes to get him breathing, but he left the OR with a decent APGAR score (7), and breathing on his own with a CPAP machine. He weighed less than a pound and a half, and was just over 12" long.

Acorn was intubated a couple of hours later, on ventilator 13.




I spent several more days in labor & delivery - not *quite* sick enough for the ICU (though we did have to argue about them not wanting to put me in a wheel chair and wheel me up to the NICU "in case something bad happens"), but definitely too sick for the mother-baby floor and discharge.  It was touch and go there for a bit though, because my blood pressure was really stubborn, and I was still developing more pre-eclampsia and HELLP symptoms in the days following Acorn's birth.

My total hospital stay was 13 days, and the day I went home was the day I got to hold him for the first time.

When Acorn was 39 days old (3 x 13), he got rid of his IV "for good"  - he eventually got one again for surgery, but that was the end of the phase where he was too small for his digestive system to work.

And now?

17 months old this past Friday the 13th, and he'd had his trach a whole year. Crawling, trying to walk, babbling, mostly fed by mouth, and all around too damn cute for words:



So yeah....we cheated death on that Friday the 13th. Both of us survived things that should have killed us - 10 years ago, he might not have survived at all, and if he had, we likely wouldn't have such a normal toddler as an outcome. Our perinatologist told me that 20 years ago, it's likely that neither of us would have survived, given the severity of the situation.

A lot of the things that helped Acorn in those early days, like surfactant for his lungs, and super high tech isolettes, are a product of research done by the March of Dimes. November is Prematurity Awareness Month, and this post is part of the Bloggers Unite "Fight for Preemies" event.

Thursday, November 12, 2009

children are people too - and so am I

There are a lot of directions this post could go. I'm still not sure this is the right one.

One of the primary values that I hold when it comes to Acorn is that he is a person, with all the rights that come with that status. He's not an inert lump of goo to be ignored, not a posession to be mistreated and thrown away, and not an animal to be forced into obeying the will of someone bigger than him just because they're bigger. For a more detailed take on this concept, go read RMB

One reason this is so near and dear to my heart: there have been (and continue to be) a long string of people in my life who present themselves in a way that says, "do these things to make me happy. Make me happy and I'll consider you worth respecting/loving/listening to."  The problem with people like this is that there really is no way to make them happy - their requests become demands, and their demands become ever more grandiose and crazy, and it's still not enough - it's never enough. It's never enough because I cannot make them happy - only they can do that, and they choose to blame their lack of happiness on the rest of us instead of getting on with their lives.

The way that "failure" is usually rewarded is with hostility towards the personhood of the person on the receiving end. Any attempt to stand firm and insist that you have rights - the right to have needs and wants, the right to have feelings, the right to hold an opinion on how something ought to be handled - is met with derision, because obviously you've already failed to prove that you're worthy of respect. But the thing is...I get to have those things because I am a person, and I exist. Not because someone else gives me those rights.

And yes, I want to protect Acorn from those sorts of people...nothing wrong with standing up for him, especially since he's not big enough to stand up for himself. But it's easier to just make sure he isn't in those sorts of situations to begin with.

Tuesday, November 10, 2009

How many diapers?

This is part of the MckLinky Blog Hop on this subject, hosted by The Cloth Diaper Report, who asks:

What is your opinion of an ideal stash? What is your dream stash and what is your reality?


Officially, I thought we had our dream stash until last month, when plans for a trip to Florida meant deciding if we were buying 'sposies for the 4 days (and given Acorn's habit of diaper rash while in sposies in the hospital, we weren't sure that was a good plan), or carrying 4 days of dirty dipes, or washing by hand...so I added 3 dozen flats this past week.


Our reality: way more diapers than I ever expected to have, but also a way different situation than I expected.

Out of rotation:
 
a dozen or so small AIOs and pockets
2 dozen infant prefolds
2 dozen more infant prefolds, and 3 preemie prefolds, which are in use as burp cloths
2 or 3 small fitteds
a half dozen small and extra small covers.
 
we thought Acorn was going to daycare, so AIOs were the thing. He's not able to do that, and outgrew all of these before he came home from the NICU.
 
There's also a handful of medium covers out of rotation. Most of these were used, but a small fraction were bought new with baby shower money when we thought Acorn was coming home.
 
 
Current rotation:
 
6 5 covers (one bit the dust this week). Out of that, one is heading that way, and 2 more are going to be outgrown in the next few weeks. Almost all of these were new.
3 dozen flats, as noted above. All bought second hand, though 2 dozen were still new in package.
26 premium prefolds (some dyed, some bleached). All bought used.
18 Imse Vimse contours - 3 new, the rest bought well used. Many of the used have holes, and ought to be patched. These are a "one size" diaper, and they're still a bit big on Acorn.
10 8 WonderWorks pockets - bought used, not our favorites. 2 of them have serious leak issues and are out of rotation.
1 AI2 - It's cute, green, and embroidered, but I can't remember the name off hand.  I won this one.
1 Smartypants pocket - I love this diaper, and the snaps - I won this as well.
16 BG3 - a white one that I won, the rest were bought barely used, in yellow, orange, and 2 shades of green.
 
Addtionally, we've got several snappis (most bought used), a dozen pins (which we only started using now that we've got flats), 3 hanging wet pails (2 of which get used as pail liners, one of which I won), and numerous smaller wet bags (almost all of them purchased new - we use them to segregate things in Acorn's diaper bag)
 
All that for one ~25 lb toddler....and here I was shooting for 2 dozen diapers, total. LOL
 
To be fair...some of our nurses have never used cloth. The contours and pockets work well for them - especially overnight. The pockets are mostly used when we're out and about, since we're also managing 50 lbs of medical gear, and trying to manage multi-piece diapers on top of that is just not happy. Prefolds get the most use, and even Big Oak does them (and the flats, with pins!). The flats are not likely to get a lot of use other than this trip, and possibly when the weather is warmer here, but you never know.


MckLinky Blog Hop

Monday, November 9, 2009

Randomness

I have a zillion thoughts zooming around my head this morning bouncing off the inside of my skull, even though (or maybe because) I'm exhausted and at work.

None of the thoughts flying around, however, are about the writing I'm supposed to do for work, of course.

So, saved for future writing so I can get them out of the way and get on with usefulness:

Our lack of respect for each other, from religion to skin color to age to disability to what clothes we wear and what we weigh, is the problem, not any of those surface characteristics. Changing how we look may affect initial impressions and reactions, but doesn't change how we treat people - and how we treat people is often based on those surface things. It's no wonder we have so many wars and so many people doing drastic things when they're stressed.

Drama with the EI instructor, and why Acorn failing next week's hearing test might be a good thing

Things I want in my new blog template....

Thoughts on introducing religion to Acorn, when most of his caregivers are a completely different religion

Saturday, October 31, 2009

Happy Samhain, or Halloween for the rest of the world

The evening is almost over, but I hope you all have enjoyed your evening of children in costume - both the little ones and the not so little ones - and the ensuing sugar rush.

We've had a quiet evening ourselves - a nice family evening. Acorn spent some time dressed up as Darth Vader (complete with action breath sounds!), and playing with Auntie K (Big Oak's girlfriend). We handed out candy and had a nice dinner - salads, and spaghetti (homemade sauce, out of the freezer). No trick-or-treating for Acorn - he's too small to appreciate it, and he doesn't eat candy either, so no need to have a lot of it on hand.

I made applesauce and banana bread this afternoon too, and I feel really good about staying on top of things and taking care of what we're eating. It's about time to head up for a brief private holiday ritual, and then bed.


Today, one year ago, we were crushed when Acorn had worsening respiratory distress, and what may have been his worst blood gas ever. Just two weeks before, we'd been working on breastfeeding and planning to bring him home for good. Instead, we'd moved back out of the special nursery, and into critical care again. A few days later we were discussing a tracheostomy for "long term ventilation" and a g-tube for feeding, because the risk of overstressing his system was too high. It took less than two weeks to get things lined up and get him into surgery.

In that respect, it will likely always be a bittersweet day for us. Even so, it's a good time of year for us to remember what's important.

Tuesday, October 27, 2009

How we found cloth diapers

This post is part of the Cloth Diapering Bloggers and Dirty Diaper Laundry hosted Cloth Diaper Carnival that is held every month. Many bloggers get together and write about the same topic. This month is “Where did you first hear about/ see cloth diapers?”

I was a cloth diaper baby.

So was the older of my two younger brothers.

The other, my baby brother, was cloth diapered at first, but his super sensitive skin, combined with daycare, eventually resulted in switching to 'sposies for everyone's sanity.

Back in the day, your choices were prefolds or flats, and horrible vinyl shorts...and I remember them always smelling.

And yet...When I started thinking about having babies, I wanted cloth for my kids.

My husband was reasonably ok with the idea - he'd babysat for cloth babies before. And the idea of not buying diapers was a strong motivator - we were already trying to reduce our waste: recycling is a way of life at our house.

So when I got pregnant, I went looking for diapers and diaper services...and found the wonders of pockets and fitteds and AIOs and cute prints...and no vinyl anywhere. We registered for diapers.

And then, the unthinkable: an overnight stay in the hospital to adjust my blood pressure meds became an emergency delivery at 27 weeks (and nearly a stay in the ICU for me).

We expected to bring home a 4 pound baby three months later, so we started buying diapers anyway  - tie dyed prefolds (because they're so easy to wash), a few AIOs for daycare....we found a daycare that had no issues with cloth, and asked if we knew of any diaper services.

And that three months turned into 9 months....and all those diapers were outgrown....and still, our little Acorn lingered in the NICU, with a lingering diaper rash even after a change in formulas.

Cloth diapering mamas here kept me going. They cheered every step closer to home, and mourned every set-back. They helped me research diaper rash solutions, and even helped me prepare an argument for switching to cloth, if things didn't clear up. They were far more supportive than my family, and became the only mama group here locally that I fit in with.

When Acorn came home at 9 1/2 months and almost 17 pounds, we had diaper stash number 2 waiting...and have been rash free since, other than a few trips back to the hospital, where 'sposies always seem to bring the rash back.

All of our nurses at home who care for Acorn had to get over the cloth diapers, and use them, because we don't keep 'sposies. They're in love with the BG 3.0 for night time, because Acorn sleeps through more soundly when he's really dry. The staff at all the doctors' offices are amazed by the cuteness. And a lot of the parents on the special needs boards I frequent are awed that we manage the extra laundry.

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Monday, October 26, 2009

the EI saga continues

I sent Acorn's teacher a letter last week, detailing our concerns with her interactions with Acorn. We're waiting to see how things go now, but I'm still not sure she's really the right person to work with him, based on her experiences and way of approaching things.



She keeps asking how we know that he understands signs if he doesn't use them. By the same logic, do we expect that toddlers don't understand words they can't say yet? Then again, during the evaluation this past spring, she asked how we knew he was laughing if he made no sounds.  *sigh*

We finally got her to start signing with him, rather than trying to get him to only point at things (she's apparently got a lot of experience in teaching kids to use alternative communication devices, which is not what he needs, since Acorn is already trying to talk over the vent, and already signing). Right now, she wants us to document signs used and how he responds because she's just not convinced that the signs posted on his wall are signs he knows.

Parent-Teacher conferences are coming up soon, and I am insisting on getting her and the various therapists (including the speech therapist that can't see Acorn because he's too young) being there if I'm going to take the time to attend.

Monday, October 19, 2009

herbs and medicines

You know, sometimes herbs are just the thing, and other times you really need a doctor.

Obligatory side note: I challenge anyone who thinks that doing the right spell will solve every problem to find the spell that will heal Acorn's lungs and get rid of all this equipment and drama (not an issue this week, dear friends, but one I expect to hear if we're out and about in the Pagan community, because I certainly heard it when I was trying to get pregnant). For those of you who believe illnesses are related to karma: the lesson we're all learning from Acorn is not to slap people for saying these sorts of silly things, because we should be nice to those who are too stupid to know better.

That being said....today I ache. All my joints. I know it's a function of the season - it happens most years. And you'd think, being the good PaganMama that I am, I'd have some herbal remedy at hand, already made up....or at least, I'd know exactly what herbs to use in my tea this morning.

Instead, I take an anti-inflammatory - it's a prescription this week, because I injured my wrist recently, and was given this to take for it, so I might as well finish off the bottle on related pains. Gods hope the pain lets up soon, because if I take this stuff (or any other NSAID) 3 or 4 days in a row, I start bruising for no reason, and it makes people wonder what I do in my free time, or whether I'm a victim of domestic violence. And if I'm in a car accident at that point, getting wounds to clot correctly will be a toss-up, and other issues will ensue. Yes, I've been seen by a doctor for this. No, they found nothing technically wrong, other than the fact that I bruise too easily. That's why they call it "practicing" medicine - they practice on you until they fix you or kill you.

I've never been big on rote memorization. I was an engineer long before I was a priestess, and engineers learn, first and foremost, to look things up and check their work. Memorizing lists of herbs I may or may not use in the future, and their indications, is not high on my priority list.

So...I could go into my meditation room, stnad in front of the two large bookcases full of facts and opinions, pull out two or three books on herbs and other remedies, look up the possible solutions, see if I've got the right stuff (I probably do), make the remedy, and use it.....

...or I could just take the pills that I've already paid for, and sleep a little later in the mornings. I'm thinking sleep wins.

Saturday, October 17, 2009

Another difficult thing for special needs parents: control

The common response for most humans, when stuck in a situation that is out of their control, is to try to find a way to gain control in any way they can. When your child has a medical condition, many many things are outside of your control every single day.

One thing I'm really struggling with lately: people buying clothes for Acorn.

It's not that he needs clothes - he's got plenty. But it seems to be the only way some people have of trying to be helpful.


I'm sure part of my irritation goes back to my feeling that we don't need charity. Did I mention that I'm employed, making more on my own than my parents (who had 3 kids) ever made jointly? Did I mention that we've been blessed with amazing insurance that has so far picked up the entire tab for Acorn's care and treatment?

And it's not like they pick clothes that I love. Far from it, actually.

And that's part of it too. We have too much stuff overall, and we've agreed not to buy more things just to buy them - we only buy things we really need, or we really really love....and so having more clothes for Acorn that are just blah is just the opposite of our parenting philosophy here.

Maybe I should just donate all the stuff I don't like. But then people would ask, and I'm just plain tired of having to justify everything about Acorn.

Friday, October 16, 2009

privacy

One of the hard things about dealing with Acorn's medical issues is the lack of privacy. I've always been a very private person, but here I am, people tramping in and out of the house every day, every one of them needing to know his background - our background - his likes and dislikes, what pets we have, what hours we keep, and on and on and on.

We hired a housekeeper last year after Big Oak broke his leg. We were at the NICU every night, and barely keeping ourselves in clean underwear, much less cleaning up after ourselves. We kept her, because we need the help, because most of our non-work, non-sleep time is taken up with Acorn.

We have nurses - 3 on days right now (though there have been 4), and 3 others on nights (though we've been through about 6 total). Every one of them knows Acorn's medical history, knows when we get up in the morning and when we go to bed, and everyone on days has talked with his doctors, therapists, social workers, and teachers.

We have 4 therapists (well, 3 now because one of them quit, but still)....all of whom know everything the nurses know. We also have an Early Intervention teacher, and the speech therapist and social worker at school. We have a medicaid case manager too. And we've talked with the social worker at the hospital.

Plus, it's not uncommon for people who meet Acorn to ask, "What are the tubes for?" or even, "What's his problem?" and expect an answer. While I'm often giving a short answer like, "he was a preemie, and we're helping his lungs catch up," many people push for more details. (Of course, there's also the people who give us dirty looks, or who stare at us as they edge away, fearing that whatever Acorn has, they might get it).

Sometimes, I just wish we weren't needing to be so open to everyone about everything. But it is what it is right now, you know?

Saturday, October 10, 2009

out of the house

One of the things that we always said was that we weren't going to be the kind of people who let having a child end our (rather limited) social life. We don't get out much as it is, and those few social connections are important.

Today was one of those days. We drove well over an hour to spend the late afternoon and into the evening watching movies with friends...and brought Acorn along. Having friends who aren't overly fazed by him and his accessories is good - makes things a little more normal for us, all things considered. Especially since it's not like we can just call some local teenager to come babysit for us.

We left early enough to get home, get a sleeping Acorn up to bed, and get a portion of the gear out of the car before the nurse pulled up.  She's staying late  in the morning too, so we all get a litttle more sleep.

Which is exactly where I'm headed, as soon as the diapers finish thier rinse cycle so I can get them washing.

Friday, October 9, 2009

Early Intervention Woes

I'm trying to decide what to do about Acorn's IFSP (individual family service plan, the document that details what the early intervention folks from the school will do for Acorn and our family - when he's 3, we get an IEP, the school-age version of it).

Thing is, his teacher appears to have little experience with kids with medical issues. And it's just not working.

So....do I send her a note explaining our concerns, or do I just write a letter to the director of special services and complain and insist on changes? I'm starting to think that starting with the teacher is the way to go.

silly doctors.

It took 5 years to get pregnant with Acorn, in part because of PCOS, and in part because of other unidentified problems.

One of the things that feeds into PCOS is low thyroid.

This week I went to the endocrinologist for a checkup. She had lowered my meds after my last round of bloodwork, but it turns out she thought she was raising them. No wonder I've been tired - I thought it was odd that she lowered the dose at the time, too, but we've been so busy with everything that I figured it was just me.

oy.

Here's hoping the new dose improves things.

Thursday, October 8, 2009

2 years of insanity

Sometimes I get the impression that people don't understand what I mean when I say that our life is crazy. In the last 24 months:

  • my mother files for divorce and moves out of my childhood home.
  • we walk out of Christmas morning festivities because my brother can't stop being insulting
  • my car breaks down, twice - once while we're out of state
  • the transmission went out on the van, resulting in us buying a new car, because the repairs were 3 times the value of the van (then again, I work for a car company, and I never liked that van anyway)
  • 10 weeks of morning sickness from hell, bordering on requiring hospitalization
  • Big Oak's grandfather passed away
  • blood pressure issues in pregnancy lead to pre-eclampsia, and then to HELLP, with Acorn delivered by emergency C-section after a failed induction at 27 weeks.
  • Found out our baby girl was a boy, and would need surgery to repair a birth defect of his parts
  • Acorn has had 3 surgeries and one bronchial scope under anesthesia.
  • Acorn got all the way to nasal cannual, almost ready to come home, and then suffered a respiratory crash
  • I get to breastfeed, finally, but only 3 weeks before he crashed. I was already fighting to keep any supply at all at that point, and it really was the beginning of the end for pumping.
  • Big Oak was struck by a car while crossing the street, one very short block from our house. His leg was badly broken, and he had to be completely off of the leg until after Christmas.
  • Our house was broken into, while we were home, right before that Christmas. I confront the intruder - he gets my laptop, but I get his coat, which turns out to have his parole officer's name, phone number, and his appointment times on a slip of paper in his pocket.
  • Acorn battles oral aversions - when he's allowed to eat post trach, it makes him gag.
  • Acorn comes home, but is hospitalized 3 times in the next 10 weeks - 2 of those for RSV, one of them including transport by ambulance.

Wednesday, October 7, 2009

Today's Diaper Post

Get a whole diaper cake from Grow In Style, using Nifty Nappies.


And The First Time Around is giving away Kushies Ultra-Lites - they come in such cute prints, and they're unique, not like the prints you see on some other diapers.

The blessings of fall

This time last year, we were trying to figure out getting Big Oak around with his badly broken, just-put-together-a-few-days-ago, don't-put-any-weight-on-it, multiple-percocet-a-day-painful leg. And we had just gotten Acorn off CPAP completely for the first time (and though we didn't know it, a few days later, he'd be breastfeeding for the first time).

But even so, it was still fall. And while the long evenings at the hospital kept us insulated from the seasons, my drive to work didn't.

I have a really really good job - and even on the bad days, I try to keep that in mind. I get paid lots of money to sometimes do things that make my soul sing, and sometimes do things feel like they will eat me alive. I have insurance that has paid for everything Acorn needs without question. I get to play with cool toys some days, and occasionally my bosses even recognize the really useful stuff I do.

And I have this job, this sometimes good and sometimes maddening job, in the middle of what looks like a park. Every day, if I wanted to, I could go out and walk the grounds, have lunch at a picnic table under 50 year old trees...smell the flowers in the spring and early summer....

...and see the leaves begin to change in the fall, like they are this morning. Dark clouds slipping by in the cool, crisp, dusky dawn, with a mix of dark green, gold, and barely reddish leaves.

Some days, driving to work can be a spiritual experience.

Tuesday, October 6, 2009

Today's Diaper Post

Dirty Diaper Laundry is giving away a Softbums basic pack - that's one cover and 3 soakers.

The Cloth Diaper Whisperer's Fluff Friday this week gets the winner some Baby Bee Hinds Diapers

Babeelove has a giveaway of Little Bear Bums fitteds on her blog

Playing catch-up

I was home sick yesterday, with a migraine triggered by a muscle spasm in my neck. How fun - NOT!

This morning, I'm back at work, saving the world from insanity - or at least, keeping things moving.

And after yesterday, this week I need to look up a new sign for Acorn - "BITE" - as in, no, Acorn, mommy's toes are not for biting. Mommy's knee isn't for biting either (and the fact that he got enough skin & jeans in his mouth for that to hurt says a lot).

There's another diaper giveaway post coming today too, so be on the lookout for it. I'm sure there are other giveaways I ought to play along with, but nothing lately has struck my fancy. The truth is, there's not much we really need, and we have more stuff than any one family righfully deserves, you know?

Sunday, October 4, 2009

more thoughts on prayers

I wrote these two verses tonight - one for morning, and one for evening. I'm not sure I'm done with them, but they're a good start.

Father Sun has ended his day
and Mother Moon is on her way
to watch me while I sleep and dream
she peeks through my window with her moonbeam.

Mother Moon has ended her night
and Father Sun has brought his light
to keep me safe while I play
and brighten up this brand new day.

Friday, October 2, 2009

Therapy - a blessing and a curse

Scheduling, at our house, is a crazy crazy ride.

Since mid-June, Acorn has had 5-6 sessions of therapy a week. 2 physical therapy (PT) hours with the fabulous therapist from our insurance, 2 occupational therapy (OT) hours with the less-than-stellar therapist from the insurance, 1 PT session from the school's early intervention (EI) program (30 minutes only), and the same for OT from the school.

Add in 3-5 doctor's visits a month, plus a nap schedule typical of most toddlers, plus nursing, plus mom and dad working and occasionally having lives, and chaos ensues.

Don't get me wrong - any therapy Acorn can get is usually a good thing. He's behind on milestones because of his time in the hospital, and the only way he'll catch up is with this sort of intensive effort.  But still...it runs our lives. Every interaction, there's a voice in the back of my head wondering what his therapists would think of this latest activity.

And now, to add to the insanity, there's "school." Thanks to our pediatrician, Acorn gets all of his EI services at home, as a homebound student. This includes a whole hour every week with an early childhood teacher. Yes, that's twice as much time as the therapists...she's more important than them, as far as the school is concerned.

It seems odd to me (and I'm sure in the coming week's you'll hear more about our IEP/IFSP drama as I stir the pot trying to get something that works better than what we've got) - his two major deficit areas are expressive language and gross motor skills. She's not a speech therapist, and doesn't encourage him to vocalize. Acorn understands more signs than the teacher knows. So it doesn't seem that she's qualified to help on that front. She does a lot of playing with toys, but nothing that the OT hasn't already been doing. So right now, I'm trying to figure out what her purpose is in our lives, and why she's taking up our time. 

She's pushy about things she really has no knowledge of, like how wonderful it would be for us to meet other EI parents, or how Acorn should spend more time in his high chair.

I was ambivalent about eventually sending him to school....now I'm dreading it, and it's still years away. What a terrible way to encourage faith in the system

And even more diapers

Are you tired of hearing about diapers yet?

The First Time Around has 2 contests right now:
The first is for a Drybees AIO; the second is for a Snap-Ez Eco OS. 

I'm not a super big fan of AIOs, but free diapers are free diapers, you know?

Because diapers are good for the environment...

Monkey Toes Reviews is giving away a Sweet Pea diaper. I'm super impressed - they have loops for making line drying easier! Not that we'll be drying outdoors much soon here in the great white north (it was 50 and raining this morning....welcome to fall!), but it's still a neat idea.

Wednesday, September 30, 2009

One more diaper post

Dirty Diaper Laundry is also giving away Bambino Mio Nappys. These are a really cute prefold and cover set-up, which comes in packs.

More Diapers!

Organic Girl did a review of EcoBebe Boutique, and is giving away a cloth diaper. She's in Canada, as is EcoBebe, but the contest is open to those in the US as well.

Organic Girl also did a review of diapers from the Funky Diaper Company - they've got super cute prints you're not going to find anywhere else.

LHDN reviewed GADbaby diapers with snaps, and is giving one away.

Dirty Diaper Laundry is also giving away 2 Kiwi Pie OS fitteds, thanks to the Natural Baby Company

Tuesday, September 29, 2009

Random ponderings on Pagan parenting

Long before I had kids, I read a ton of Pagan parenting books (as a part of being involved in SpiralScouts locally). I need to go back and re-read them and see if there's anything good there that I've forgotten.

A lot of the bloggers I read are very mainstream Christian moms - not a bad thing in and of itself, but definitely interesting to see the times and places their faith comes into play, and how they handle it.

One is starting a new homeschooling project - every week they'll have a theme, and use Bible stories and verses to demonstrate the theme in family life, school life, their reading, etc. They'll also have a prayer journal - who they prayed for and what happened. And I find myself thinking, "look, it's a baby Book of Shadows!"  I could totally see doing this with Acorn when he's bigger - a theme, correspondences to go with the theme, a myth or two, etc....no need for it to be big drama, just something else to do, you know?

I'm not sure what else we'll do. Probably set up a toddler-friendly altar with toys for the elements...any other thoughts?

Monday, September 28, 2009

Baby Kicks Giveaway!

The Cloth Diaper Whisperer has BabyKicks diapers up for grabs this week on fluff friday. Cute hemp fluffy goodness - we can always use another diaper, right? :)

Sunday, September 27, 2009

Who's the God of insurance?

Because I probably owe him some incense and a thank you.

We have been sweating the end of Acorn's insurance benefits for physical and occupational therapy - 2 hours of each per week has helped him make major progress on getting his gross motor skills a little closer to on-target.

As far as we could tell, the insurance was going to pay for 50 visits, total, this year (where the year starts June 1 with the rest of my benefits), and then we were going to have to get another referral set up just the right way to get medicaid to maybe pay for some of it, possibly.


And if not...it's either pay out of pocket, or depend on his 30 minutes from the school each week to hopefully get us enough information to do it for him ourselves.

We have money. But not that much money.

So, this is a huge hugs thing for us. There are apparently no caps on Acorn's in-home therapy. There've been other things lately that our insurance have done that have surprised us - no arguing about approving his $75 a dose (given twice a day) inhaled meds. No arguing about supplies. No trying to cut our nursing hours. I am baffled - I didn't think my insurance was that good.

And I'm thankful every day for that unexpected blessing.

Friday, September 25, 2009

A crazy week

We've had a marathon of a week, and it just keeps getting more crazy.

The washer broke (and hopefully will be fixed today because diapers are overdue for washing).

Appointments have run late.

Work has run late, and been stressful - and some of the things I've been asked to do, while done as requested, have made other people mad (not at me, but at the person directing me).

The mother of one of Acorn's nurses passed away last week, so we've been in schedule limbo, including one very long day where PaganMama was on Acorn duty from 7 am until 10:30 pm with no other assistance.

For those of you with more normal families, you're probably thinking, "I take care of my kid all day, what's your problem?" But I assure you, taking care of Acorn is physically and emotionally draining, in a way a normal kid is not.

Normal kids don't come with 50 lbs of gear attached.

Normal kids rarely have days where they have multiple appointments to sandwich in between naps, so if a nap is off by half an hour, it's no big deal....Acorn, on the other hand, only got a 40 minute nap Tuesday, because he didn't nap on time for his first nap, and it snowballed from there. He and I are both still catching up on sleep. And that sort of schedule is a weekly occurrence.



Normal kids don't require batteries or an electrical outlet to keep breathing.

Normal kids don't come with the worry that they might pull on something, set off screaming alarms, and then suffocate....and they especially don't come with that worry while strapped into their car seats.

I took Acorn to his 15 month well-baby check up, 10 miles away, by myself. Had something happened on the way, my only recourse would be to pull off the road into a parking lot or side street, get out of the front seat, and into the back seat, diagnose the problem, and fix it....hopefully before he turns too blue.

Don't get me wrong - things are better every week. He's stronger, has more reserves, needs less oxygen, does more in therapy, he's on the verge of  crawling and walking (and this from a kid who couldn't roll over in March).

We're mostly past the stage where Acorn turned blue every time he pooped, but it's not so far gone that we've stopped worrying about it.

There was a time where I would never have even thought to attempt a car trip without help - that's a sign of how much better he's gotten this summer. If something had happened, I know I probably had 4-5 minutes before things were completely out of control, rather than the 60 seconds we had when he first came home from the hospital. We don't carry the machine to check his oxygen saturation with us everywhere we go anymore.

We actually sleep on nights we don't have nursing.

And every day, I remind my Gods and Goddesses how greatful we are for this miracle baby, and how happy we are to have this smiling, happy, whip-smart kiddo to brighten our days.

Thursday, September 24, 2009

Bed time

I think Acorn needs a bedtime routine.

He's at that age where he doesn't just fall asleep anywhere. And now that he's been out of the hospital long enough that we've abandoned their routines, he needs a bit more stability in his life (which is probably why weekends are so hard, because we're still learning to balance his schedule with ours, and generally doing a bad job - during the week, his nurses keep his schedule going quite swimmingly).

We've never done the nightly bath thing. It's hard on my skin, and his is even more sensitive, so it's not worth upsetting the apple cart, you know? But I'm thinking 9 pm, jammies (now that it'll soon be PJ weather here in the great white north again), g-tube and trach cleaning and new ties (we've found his nurses to be inconsistent on this front), a book or two, and then to bed. He puts himself to sleep really well, which is good news for us.

I think I'd like to add a prayer in there. Something appropriately Pagan - and I'm actually pretty flexible on that, having done everything from ceremonial magick to Wicca to hard-core polytheist to Dianic. Right now, I just want something that works for us, and something that is easy for little ones to say and remember - it's not like Acorn will be talking anytime soon, but it needs to be something that will be easy for him when he does.

Google gives lots of options, and like most things meant for kids these days (and like a surprising number of Pagan-y things these days), they mostly seem kinda hokey. So far, the best I've found (which comes with an "author unknown" attribution, so if it's yours, please let me know so I can give appropriate credit):

Day is done, it's time for bed
Goddess bless my sleepy head
Earth and Water, Air and Fire
Bring gentle dreams as I retire
When the morning sun does rise
The God will bless my open eyes

Anyways. I think we'll start with that, and see if we can make progress. The one stumbling block I see is that some nights our nurses come at 9, and most of them are obviously Christian - several wear crosses, one sends her kids to Catholic school - so I doubt they'd do prayers with him. But it'd be a start.

FuzziBunz giveaway

We haven't tried FuzziBunz yet, but I've heard they're really good. And if I win some from Just For Me and You, I'll have the opportunity to try them. :)

They have adjustable elastic - that sounds promising for a good fit, right?

Wednesday, September 23, 2009

Diapers!

We cloth diaper. They're better for our wallets, better for the environment, and better for Acorn's bottom (we haven't had a rash outside of the hospital; every time he's back in there in sposies he breaks out).

You're probably going to hear a lot about diapers here, because one of the best ways to build up a nice diaper stash is to enter contests to win them for free, and one of the ways to enter is often to post about a give-away.

The Cloth Diaper Whisperer has Fluff Fridays - every Friday they give away something. This week it's a bumGenius one-size diaper. We have quite a few BGs for out-and-about usage (and occasional overnights, since a double-stuffed dipe seems to be nearly bullet proof). And a few more would be good, since I'm kinda hoping to get a diaper lending library going here at some point.

So, go read, enter, and have a good time.....and hope we win :)

Where to begin?

It's not that I haven't done the blogging thing before - I've got several, updated with varying frequency. But they've all been sort of pigeon-holed, and none of them are really about life anymore, they're about a topic. And to some extent I miss being able just to talk about what's going on, rather than trying to write on specific topics - I can't really write about religion on my son's update blog, I can't write about his medical needs and the frustrations that go with them on our signing blog, etc etc etc.

I'm trying to figure out parenting, much less Pagan parenting, with a special needs, medically fragile kiddo. He's better and better every day, but it's yet another challenge that we as a community aren't really prepared to handle.

So...for now, here we are:

baby boy is our little Acorn. He's 15 months old, and has a feeding tube and a ventilator (21 hours a day, down from 24 hours). He'll outgrow his medical issues, it's a crazy tough waiting game though.

Husband of nearly a decade (and significant other for several years before that) is Big Oak, a full-time-working geek. Do we have our issues? Sure, but they're things we can work out and overcome, just as we've done for going on 14 years now. We're poly, but not because we're Pagan.

And me, Pagan Mama, a full-time-working geeky mama (and yes, it's my insurance paying for Acorn's health). We sign with him (and I teach baby sign language).

I could say a ton about us, and our family and life, but really, I'd rather just show you who we are as I write. We live in a nice house in a nice suburb - the neighbors probably don't know we're Pagan, or if they do, we blend in well enough that it's not an issue, given the variety of ethnicities and countries-of-origins of people on our street. We have a great school district, but I still wonder about homeschooling or private schools. We pay the bills, drive decent cars, and can generally afford to do whatever we want to do, though we're still paying off "young and stupid" things. We're meat-eating, attachment-parenting, polytheists who belong to an organization that supports family-based Wiccan-based covens because they're the closest thing we've found to doing what we do.

Mostly, we're just finding our way.