Wednesday, June 25, 2014

Images from earlier posts

Not all of Kansas is flat.

Paradoxically yellow purple cone flower (Echinacea paradoxa) and prairie turnip (Pediomelum esculentum in a Missouri glade (briefly mentioned here, along with the rattlesnake).

Ozark Glade
In Kansas, about where Dianthus was standing in above image.

Monday, June 23, 2014

Manioc-Cassava-Tapioca-Yuca Four Ways in Four Days

I ate a raw piece of Manihot esculenta Friday night and so far it hasn't killed me.

Which is good.  I didn't really expect it to, but I always wondered if it just might, as the roots contain cyanogenic glucosides to some degree.  I first learned of manioc (as manioc) in a wonderful Nutritional Anthropology class at C.U..  While I was fascinated by my professor's research into the plant (how sustainable swidden agriculture can be in the upper Amazon basin, why people would select plants that have more cyanide rather than less, how drought exacerbates cyanide poisoning among the manioc-dependent) but I was scared when she told me that it was on sale at ethnic grocery stores in town.  A personal point of pride (since about 6th grade) was that I could always identify what not to eat in my surroundings, and here she was suggesting that something in a produce bin might harm me if I took it home and stuck it into a stir fry.

So, in college I was fascinated with the plant, buy never ate any.

In graduate school, I was somewhat disappointed to learn that the yuca added as a side dish to the great veggie enchiladas at La Parilla was not actually the roots of the yucca we see around (Yucca glauca) but somehow didn't put it together that I was eating manioc.

Tapioca pudding reminds me of my grandparents, unless it is weird, warm coconut milk pudding with fruit and odd tapioca shapes at a Thai buffet, and then it just reminds me of my sons at Thai buffets.

 When I moved to Oklahoma, I was shocked to find big ball tapioca on the shelf at the local grocery store. I excitedly pointed it out to my mother, "Bubble tea is big in Western Oklahoma?!"  She thought I was joking, but I had never had large pearl tapioca in anything other than bubble tea, first with her in Nanjing, China, and later at our favorite tea spot in Lawrence.  I had never heard of "Frog Eye Salad" the Mister still thinks I'm making it up when I tell him that Frog Eye Salad is why they sell big ball tapioca in my small town.

All of these products are from the same plant.  Manihot esculenta is known as manioc, cassava, and yuca (typically pronounced so it alliterates with ukulele: YOU-ke rather than spiny YUCK-a yucca), and from its starch, tapioca is derived.  The plant is in the Euphorbiaceae (the spurge family), and is the only edible crop from that giant family*.  Manioc is a major player on the world food scene.  The factoid given varies, but it a staple food for at least 500,000,000 people and ranks just behind rice and maize for food importance in the tropics.  It comes in bitter (higher cyanogenic glucosides) and sweet (lover cyanogenic glucosides) forms and my Roots cookbook assures me that the fat waxed root I bought at the Mexican Supermercado in Norman, or the thinner root I found at the local grocery store, are sweet.

I made some tapioca pudding using minute tapioca.  Then I fried some chips.  Then I fried some yuca fries.  Then I made a breakfast pudding out of long-soak tapioca, young coconut chunks, grated yuca, and quinoa, among other things, and the boys and I assembled berry-pudding breakfast parfaits**.  Today I fried the rest of the root.

The pudding and the chips were great-- for a home fryer, yuca is preferable to potatoes because with the lower water content yuca chips crisp up better. None the less, I won't be buying manioc/yuca/cassava roots again any time soon.  Although who knows, I should probably look up a recipe for frog eye salad.

*Quiz, how is manioc like pineapple and vanilla?

**Asked the Mister, "Are you following any sort of a recipe?"  Well, not really, unless you count the pudding recipe on the tapioca package, a vague recollection of over-night non-oatmeal oatmeal using quinoa, a recipe for a Thai coconut tapioca custard in hand, and my desire to somehow replicate, but make higher protein and more breakfast worthy, the Thai buffet pudding.  I had all sorts of recipes.  They just weren't for quite what I was making.

Sunday, June 15, 2014

Counting by fours

Four years ago I was moving from West Virginia, where the Mister and I watched the US-Ghana game with almost one-year-old Dianthus in the scary bar we'd never been in on a Saturday afternoon after the moving van had taken away our stuff, to Oklahoma.  But when the moving company let us know our stuff would arrive two weeks later than we had been told when they left, we went on to Colorado where we watched the Germany-Spain semi-final at a local bar with my family from Colorado and Germany.

Eight years ago we were moving from Lawrence, Kansas, where we watched lots of games with lots of friends at the Red Lyon, (except the US-Ghana game because the Red Lyon was packed, so we crowded into Buffalo Wild Wings with dear friends T and J for breakfast), to West Virginia, where The Mister and I watched the Italy-France final at a Buffalo Wild Wings in Morgantown, WV, on a househunting trip.

Twelve years ago, neither the Mister nor T's wife J was in our pictures.  T and I drove from Lawrence to Arrowhead Stadium (in Missouri) in the middle of the night to watch the US beat Mexico.  I rushed back from field work in Nebraska to throw a 6 a.m. breakfast party as T, J, C, B and I watched the US lose to Germany.  My brother and I watched the final (Germany - Brazil) in Princeton, Illinois, following my cousin's wedding (Happy Anniversary C and K!).

I don't remember any football 16 years ago, but my brother did get married that summer (Happy Anniversary J and C!).

Twenty years ago I watched, with my family, a close US game from a small diner in Concrete, Washington, as my brother pined for the woman he thought had just left
life (and is now his wife).

Micheal Dalder, Reuters,
Obviously Not Taken or Owned by Me
I relayed some of this to a friend I was visiting in Kansas this past weekend, and she replied, "I had no idea you were such a soccer fan."

Come to think of it, I didn't either.

But one of the highlights of an altogether fantastic recent trip to Missouri and Kansas was sitting in the Red Lyon in Lawrence with the Mister and feeling the place erupt every time they showed the replay of the Van Persie's flying header goal, knowing that friends all over the world were doing the same thing,
Men's World Cup Soccer doesn't get me choked up the way that Women's World Cup Soccer does, but it does get me pretty excited (and apparently moving state to state).

Thursday, June 12, 2014

My roots in Missouri?

Tuesday the Mister and I hiked through the oak woods near Branson, Missouri in the rain.  We came upon a glade (a.k.a. "a bald" or "a barren") and there, among the echinacea (including yellow Echinacea paradoxa, a first for me), milkweeds and sedges was a little prairie turnip, right at the Mister's toe.  I was not expecting one of my roots there at the edge of the wet forest, but if it was a snake it would have bit us.
Speaking of snakes that would have bit us, this morning the Mister's Mother found a prairie rattler in her garden as she was weeding.  It wasn't big rattle snake, but it was a rattle snake RIGHT THERE in the garden by the door.  In other wildlife news, the Mister and I saw the smallest frog we've ever seen (tropical tree frogs included) along the path in the Ozarks, and a Plains Leopard Frog on the road here in Central Kansas this morning.
Images sooner or later.

Friday, June 6, 2014

On Becoming a Therapy Mom

As the Mister and I were deciding where we will lunch we when visit the orthotist in Norman in two weeks and I was debating the merits of thera-putty as a backseat toy on the upcoming road trip, I realized that I had become one of those moms.  The kind of mom who honestly believes her kids' activities are her hobby. "We do pageants," or "I'll see my friends between the school basketball season and the tryouts for the traveling team." The kind of "soccer mom" pollsters covet or "dance mom" that Lifetime uses for bad-looking television.  Except right now I'm a therapy mom.

Since I gave finals a month ago, I've made five trips to "The City" for medical appointments (four for Aster and one, thankfully unnecessary, for me), we've had three in-house appointments with the SoonerStart program and a formal Individual Assessment Plan meeting with the school.  We've got appointments upcoming in Norman and Denver before school starts again and we still need to get everyone to the dentist and to get his or her shots.  I've lined up some swimming and gymnastics with intention that they are therapeutic (but mostly because they are fun) and you should see the bag of tricks (including ace bandages and shaving cream) I bought for "CT Time" (constraint therapy).   We're "bear walking", big ball rolling and stretching daily.
Dianthus and Aster one-handed for first day of
home "CT Time"**

Compared to many of the CHASA parents, our therapy schedule is mild.  Many families are seeing physical therapists and occupational therapists weekly (or more) from a few months old.  Many also do speech therapy, some behavioral- hippo- vision- aqua- or other therapy,
and I was very sad to learn that most constraint therapy camps I heard parents talking about are not cool camps in the woods filled with kids whose good arms are in casts, but rather month-long day camps in medical buildings (with kids whose good arms are in casts).  I hope the reason that Aster hasn't had this sort of intensive therapy is because he hasn't needed it (the affected areas of his body seem limited), but I also know that living in a small town, lack of services, lack of anyone coordinating services and laziness of parents have all contributed*.

Aster is less constrained than originally intended
The scary thing is that we have no idea what's the right amount.  Aster has some use of his right hand and is an amazing compensator. Some of the people working with him have taken this as a sign that we are doing the right things and shouldn't stress, as he will clearly figure out ways to do what he wants to do.  Others see it as a sign that we could do so much more. Clearly he has some sensation and some motor control in his right hand.  If we act aggressively now, he might be able to re-wire his neural circuitry and learn to really use that hand before spasticity, lack of coordination and plain bad habits make disuse permanent.

Recent research (and lots of anecdotal evidence) suggest that mind-body connections are more flexible and repairable than previously thought, but that the extent of this plasticity varies greatly with age and with type of damage.  Typically, brains less than four years old tend to be the most malleable.  If Aster is going to have greater use of his hand, it is going to be because he discovers control of it now.  Or it may be because he decides to play saxophone to impress some girl when he is sixteen.  Nobody really knows  But we have a little control over the former scenario. So it's time for one-handed finger-painting tomorrow and stringing Fruit Loop necklaces all the way to Branson.

*And Mom, no need to remind me that I'm not lazy, but thanks for thinking it.

**Dianthus did really well just using his left hand.  Aster, well, he's more wiggly.  In these pictures we were playing with shaving cream and food coloring on the bathroom walls.

***And yes, I am fully aware of how lucky I am that I have job, finances, husband, transportation, mental capacity, and insurance that make these things possible.  I am very very fortunate in all of those regards.

I think I am ending the Steak for Pediatric Stroke 2014 here.  Thanks for reading.

Tuesday, June 3, 2014

Still Life With Radishes

The black radish from formerly-known-as-dirty-Dillon's and the red radishes from the garden on the ranch in the Smoky Hills.

Monday, June 2, 2014

Hook, Line, and Sinker

An afternoon of catching bass after bass and an evening catch of a channel cat 6/19ths his size the next day, and now Dianthus has a bad case of fishing.

Sunday, June 1, 2014

$55 shoes: On Money Weirdness and the Cost of Cerebral Palsy

People are weird about money.  People are weird about lots of things,  but I am still surprised by how widespread weirdness about money is, among people who have it and people who don't.  And, unlike sex and death, about which people are also weird, money needs to be dealt with on a daily basis and people tend to be much more open with their opinions on the weird money habits of others. Which is one of the reasons why putting together a post about the financial aspects Andrew's diagnosis has been hard for me. Some of you would buy the $55 shoes without batting an eye.  Some of you would buy three more pairs of ill-fitting shoes while waiting for the $55 shoes to go on a great sale and then buy an un-tried $25 pair of the same brand because the company is then out of the $55 shoes.  Some of you never have a choice to buy the shoes.  Some of you think that I am asking you to buy the shoes*  And it's not really about the shoes.

But the shoes are an illustrative example, so I will start there. Aster currently wears a small, relatively simple, AFO (ankle-foot orthotic) every day.  It helps stabilize his gait and prevents him from toe walking or tripping on his toes some of the time.  He started wearing this AFO daily in January, about the same time he started wearing a pair of Pedipeds that I had purchased in some great Internet sale back in November.  The shoes fit well: they have removable inserts so that his left shoe is sized probably a whole size smaller than this right, they have a deep toe box and, while wide, can be secured snugly.  They also have great flexible soles and a reinforced toe that has not worn through in several months of constant wear. Two weeks ago he soaked his shoes in the sandbox and we realized that the other shoes we own that fit him don't fit the AFO.  I looked up Pedipeds on-line and found that they may not make the exact same shoe anymore, but one that is at-least visually similar runs $55 a pair.
I didn't click through and order them.
I don't spend $55 for a pair of shoes for a not-yet-three year old.

This is where the weirdness comes in with attitudes about money and if you want to argue with me about why it is a great deal (i.e. they last longer, fit better, and I don't have to buy two pairs.  Besides, have I looked at the prices of shoes recently?** ) or why I should wait until after the summer or next pt appointment or new AFO, feel free.

The thing is, I'm just not ready to add "special expensive shoes for life" to the list of extra expenses Aster's condition requires.  I've already mentally budgeted for the full $1,000 deductible and then some for health expenses every year.  I'll pay co-pays for appointments and drive to "The City" (or Denver, Dallas or Kansas City where there are physiatrists) when necessary.  I'm figuring out how to get him to and from the three-year-old preK program next year, which will probably require paying extra help.  If he needs a new AFO or constraint cast, I'll buy it, and if we become convinced that botox is necessary, we may very well pay for that out of pocket.

But somehow adding expensive shoes to the mix feels like too much and it feels too permanent.  (I told you people are weird about money.  I'm including myself here.) If I have other CHASA parents reading this, they may be laughing uncomfortably at my balking about the shoes when they have EEGs, sleep studies, seizure meds, custom orthotics, wheelchairs, remodeled bathrooms to they can get the kids in and out of the bath . . . but we all have a level at which rationality leaves us.  I think the shoes bothers me so much because it symbolizes an abandonment of the normal.  Medical expenses are additions to normal expenses. Having to buy special shoes, and possibly two pairs of them at a time, means that there will be none of the normal.  Options will always be limited.

Along with the time, the costs of limited options may be the most demoralizing (at least for those of us who have not suffered lengthy hospitalizations and can pay the direct costs as they occur [a CHASA blogger whose son seems about as affected as mine calculated over $10,000 annually in expenses; we haven't seen that yet but see how it could happen]).  Aster can't use Dianthus's hand-me-down pants much longer because they have buttons and zippers (and potty training attempts are useless unless Aster can pull down his own pants).  Aster may have fewer choices for instruments and sports he plays, jobs he can take and ways in which he can travel. It's not as if those of us with good bilateral movement have unlimited choice in these things. Kids in small towns don't play orchestral instruments; I don't have the ears for trombone or the body for modeling; and even the Mister and my brother don't have exactly what it takes to make it as theoretical physicists; and we all survive(d) it just fine. But it is still discouraging that Aster's options may be*** limited before he's three.  The cheap option always goes first.  And one is left contemplating $55 toddler shoes.

I'll end there.
Hopefully someday I'll get around to blogging about other costs to parents, but for now you can at least follow the thinking (and envision a photo of Aster and his shoes).  Parents have limited options in jobs they take because of insurance, because of needing flexibility for taking a kid to therapists and specialists; because of difficulties finding help and even because services vary so much state to state (and sometimes school district to school district) that sometimes moving is out of the question and sometimes it is a necessity.  [The Mister and I are currently very fortunate in those regards.]

*I'm not asking you to buy the shoes.  I am however, asking you to consider donating to CHASA so that parents who definitely need the shoes in two different sizes can exchange shoes successfully.
**and I have now, and the a new recommended option from the CHASA parents costs $55 and I saw the recommended Nikes at the outlet mall on a great special for $44.  I will admit to being "out of it" when it comes to pricing.  I was shopping in Colorado last year when my dear friend kept pointing out cute, reasonably priced kids clothes. "$12!" I thought, "that's 24 times what I normally pay for the boys' shirts!"
***and may not be.  One of the reasons that one bothers with all of these procedures and therapies is that near-normal functionality may be achievable.  There's just too little known about pediatric strokes and brain plasticity to predict in any meaningful way.