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.)

Sunday, April 8, 2012

Feeding tube bling

We've been around the block on the whole feeding tube thing, so it's both easier and harder this time around. This time we're being a little more invested in making this as stress-free a situation as possible, because the truth is that like the vent and the trach, we don't know how long we'll be needing this feeding tube.

We've managed to get Leaf transitioned back from all of her feeds being via j-tube (straight into the intestines, bypassing the stomach) to being via g-tube (straight into the stomach). We're not vomit free, mind you, but close enough that we're willing to live with it as-is. I need to contact the vent clinic team to talk about how long we need to go like this before we can have her g-j button switched back to a g-tube button. Personally, I suspect that would help us some anyway, as there will not be a tube from her stomach to her intestine that way, and the button itself will be smaller, and easier to get it good and snug so it's not wobbling in her stomach and causing more vomiting.

For Acorn, we used Button Buddies for a long time - until his tube was the wrong size and started leaking. For Leaf, this week in the mail I got some similar button wraps, and a feeding tube belt from Belly Buttons - these are super soft fleece on the back and cute butterflies on the front, and we're hopeful that Leaf's super sensitive skin will like these better than the gauze we've been using, and that it'll help reduce the amount of granulation tissue we tend to get around her button.

The belt is to help protect the button from getting caught on things, and to help route tubing if you need to leave it connected like we did when we were doing continuous feedings. I really wish these had been available when Acorn was using his only occasionally - we had more accidental tube removals due to him sliding around on his belly than we'd hoped. They're all terribly cute, and the belt is sized to grow with her so we'll probably still be using it when she eventually gets her tube out.

Because we weren't sure how long we would be doing the continuous feed bit, we also got a backpack from Feeding Essentials for Leaf's feeding pump. I really like it, and if we can get her to be even a little less pukey I can see it coming in handy; right now we're limiting feeding in the car to only if we can't avoid it - even without the risk of projectile vomit, trying to bolus from an open syringe in a moving vehicle is the definition of a disaster waiting to happen, so bolus feeds with the pump would be great in the car.

There are a number of people on facebook and on Etsy who make these sorts of things for feeding tubes - got any recommendations for anyone, or other suggestions of bling we ought to investigate?

Tuesday, April 3, 2012

On niche communities

I'm feeling grumpy this week, for a variety of reasons. Please don't take this post personally - it's a vent, an expression of where we are these days.


I live in a swirl of little niche communities. Pagan, Pagan parent, special needs parent, complex medical needs parent, natural parent, engineer, writer, hacker.... I'm never sure whether the things that fill my timeline even come into other people's field of vision if they're not part of that specific little niche.

I have a pattern, this time of year, of feeling like I don't fit in anywhere - like being stuck in the overlap of all those niche groups means there's no place that's really mine. Maybe it's just that the weirdos come out this time of year and say things that leave me feeling more marginalized than usual, I don't know. But it's something I struggle with year after year. This week, I have a good concrete example of the sorts of things that make me wonder where I really belong.


Yesterday was Autism Awareness Day. As prevalent as autism spectrum disorders are, does anyone really think there are people in this country who don't live under a rock in a forest (a la "The Village") who don't know that Autism exists - who don't know someone who has been diagnosed with a spectrum disorder (or someone who would have been were they in school now instead of 30 years ago)?  I'm still trying to figure out what it is they're trying to make us aware of, because most awareness movements have a clear statement on that, and this is one I'm just not getting.


The other Julia Roberts started a movement over at Support for Special Needs called "more in common" to point out how parents of children with special needs have a lot in common with each other, despite our children's different diagnoses, and that we should work together. Julia, I love the work you're doing, but what I'm about to say about something going on here in Michigan will show you why I think we probably actually have less in common.


In honor of Autism Awareness, the state of Michigan has three bills moving through the house and senate, mandating coverage for certain types of therapy for children with an ASD diagnosis, and offering to reimburse those costs to insurers up to a certain amount.

The amount of privilege in having a child with a diagnosis so common that your groups can afford paid lobbyists is astounding.  The fact that this is laser focused on kids with ASD diagnoses, without providing for anyone over 18 and without giving the rest of us a hand up on getting therapy paid for is painful. I know the Autism community, like many disability communities, has a disconnect between parents of children with various conditions, and adults living with those conditions and advocating for themselves, but this particular situation makes it clear to me who thinks their view is the most important.

Comments I've seen in some places claim this is not discriminatory, because kids with Autism need therapy. You know what? My kids need therapy too. 

Other comments have come out and said things along the lines of "my kid deserves therapy more than yours because he has Autism, it's not like he's retarded" - and those have left me picking my jaw up off the floor.  


Here's the thing. Acorn is clearly not a candidate for a spectrum diagnosis (and all of his therapists agree) - and that's even though he's non-verbal, has issues with novel situations and routines, and has some sensory issues (which may or may not be sufficient for a diagnosis). All of his issues are caused by other medical issues - his trach, his prematurity, his anxiety (which is secondary to medical trauma to begin with). He could benefit from more therapy with no annual limits, as is proposed in these bills...but he can't have it, because he isn't on the spectrum.

There are only a few hundred kids in this state with trachs, and not all of them are like Acorn and Leaf... there are more kids with ASD in our county than there are kids like mine in the whole country.


Does anyone else wonder if there's some failing in the way we raise kids if 1 in 88 of them is affected by a disorder that makes their functioning in society in question? That maybe schools ought to approach learning in a way that takes neurodiversity into account on a regular basis, rather than going through so many IEPs?


Leaf's speech therapy will be limited because medicaid will not pay for in-home speech and her doctors will not allow her to go to outpatient therapy (and going to outpatient therapy for one type, even though it's not available at home, means we lose the determination that allows her to have the rest of her therapy in-home....clearly she's not home bound if she can go to speech therapy). So do we risk her health, or get her the therapy she needs?