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 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


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. 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.


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 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 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.