Thursday, March 13, 2014

Resources and recommendations

First, have you seen my Amazon Widget over there? To the right... Yup. Orders placed via a click on one of the words in the product cloud add up for us. I've started planning for next school year, and the funds from orders are welcome. Thanks, friends.

I keep recommending Neurology Now to folks I run into, for all kinds of reasons. Mostly because we all possess brains, nerves, as well as the myriad blessings and confounding messiness those things entail. The articles are good for general information and the archives present an awful lot of information on just about any neurological issue one can name.

My friend's delightful art.

Another friend's fantastical structures. Which are also delightful art.

Apples and Pears and Dancing Bears, for kids struggling with reading (especially dyslexia and related issues). Sound Foundations is a UK company, with US orders processed here.

Tuesday, March 04, 2014

End the Word Day

March 5 is this day: Spread the Word to End the Word.  Here's a good piece by a great dad.


Thursday, February 27, 2014

Winter into Spring

I'm taking a few minutes to break from planning during violin lessons to mess with blog settings and Amazon links. They seem to be working, which means I'm already collecting a little bit towards next year's school materials. This is very exciting. Feel free to use the links below and to the right, and to share like crazy.

The weather has been generous the last couple of days. Sunny, highs in the low 50's, and the garden is responding accordingly. Tulips noses have  been out of the dirt for a few weeks now, and have just shot up. The Sarcococa is still smelly as can be - it saves February from feeling like  an irretrievably dismal month, garden-wise. There are baby cresses still ready for us, and a collection of gorgeous red lettuces in a raised bed. K trimmed back the Munstead lavendars while I snipped dead stuff off the bleeding hearts and freed their new burgundy shoots from the already budding vinca. The sweet woodruff is fluffing up again, and the bronze fennel is throwing feathery copper shoots. Snow is in the forecast for the weekend. Heh.

The girls have decided to put some of their Christmas money toward a 10K in April, this time with Q. So we're training a little differently, because that first 10K a year and a half ago was tough, and that was without pushing the giant boy. Last week we hit 5 miles in intervals, this week we should hit 5.5. It's kind of nifty to be out in the weather this time of year. Aside from the explicit, distracting meanness in a pounding, sunny, 22 degree wind, there's been something rewarding in each of the varying runs over the last couple of months. We pushed a tree off the trail after a couple of big wind storms went through. There are little green shoots in the swampy areas, and ducks appearing on the river again. We've discovered that the girls easily outrun me in the early parts of any given run, while I (usually) end the run at a faster pace than they're running. Except for S, who is faster than all of us, almost all of the time.

The packing of Q for cold weather runs has had it's own learning curve. He wears thermals under a layer of fleece, fleece mittens, hot towels or Hot Feet (the sticky version of Hot Hands), and a fleecy hat and maybe scarf. Tucked around him then is a fleece blanket, a down throw (stolen from a sister) when it's below 30, his fleece-lined black windproof stadium blanket, and then his velcro-ed vinyl enclosure to keep the breeze down even further. It's always interesting trying to keep his face dry (drool) and warm, and unchapped. Olive oil, Eucerin, Traumeel, and Aquaphor have all been helpful with that over the course of winters. We tuck an extra towel into the back of the Wike, too, in case we need to switch out on longer runs. I feel like we've sort of got a handle on this now - which means something is about to change, no doubt.

I guess that's us in a nutshell. Q will have some procedures toward the end of March, combining needs for anesthesia to his advantage. More about that and music and school later.

Hoping you can see some cherry blossoms where you are. If not, find some cherry ice cream or something instead. Here, I'll make some ganache to go with it. We'll share.

Monday, January 13, 2014

Widgets, maybe

I'm adding a widget here so I don't have to reach through the screen and flick somebody's nose at Google.  The last time I tried to do this, Blogger had little wrenches and one could select areas of a template to work on, using those little wrenches.  Was this too easy?  Because I could use something being just. that. easy.  GOOGLE.  Hmph.

Let's see if this works.  We all should be able to use this to shop on Amazon - fingers crossed!

I don't think that worked.  Let's try this...

One more time...  AMAZON LINK

Oy vey.

Saturday, October 12, 2013

Try, try again

I keep thinking we'll get to a place with a little more breathing room, schedule-wise, but not so far.  E is busy with classes, K and S are busy with school work, they're all practicing like mad, we're getting three runs in a week, and Q is therapy-ing as intently as ever.  I'm writing lesson plans, wrangling paperwork, and trying to shove the medical appointments in where I can.  Which reminds me:  list.  One second...

Okay.  More stuff to schedule Monday morning.

Q had a visit with his physiatrist (rehab doc) this week.  We talked through Artane (a no for now - he's typically more spastic than dystonic), Botox (yes, which means organizing ophthalmology and orthopedics quickly - the ophtho appointment needs to move up from February), and possible equipment needs as we move forward.  I like this doc, though we don't agree on everything.  She's respectful of her patients, the family process, and always checks to see if I think her proposed course of action makes sense or if we need to rethink anything.

The bath seat was a fail, unfortunately.  It's not as tall as it would need to be for one tub, and doesn't allow Q's feet to clear the toilet in the other.  On to the next option.  Meanwhile, we await approval for a car seat and a walker/gait trainer base.

So I've been thinking about what needs we have emerging here for Q over the next several months and years.  More immediately, we have a ramp to pay for, and fundraisers are underway for that.  Next up, a low-tech ramp type set up for the van would be terribly useful.  The chair is 60 lbs, so we all "lift heavy" every day - which is awesome, because we can, the big girls and I (though we have accompanying bruises), and we're glad to be able to, for as long as we can.  But one begins to be mindful of things like effort spread over Q's lifetime, of his continued growth, of our own fallibility.  Okay, my fallibility.  The rest of the Q peeps don't seem to have any trouble naming their end points.  I guess as his mama, I kind of feel like I should just keep going.  Which...  ...mumble, mumble... may not be the most realistic way of managing all the facets of Q care, long term.  Ahem.

Other needs that loom:  a ramp for the back door and more accessible paths and areas in the yard (safety issues); bathroom modifications (hoping to push this off a little longer if we can find a bathing solution - he's outgrowing the bath seat and is too slippery and heavy a fish to continue to zoom in and out of a tub as we have been ); new flooring to replace the carpet (too much drag for a boy on wheels - safety issues).

I have further thoughts on sort of "ultimate" equipment or outfitting options, but the people here are asleep and tomorrow brings an early morning.

Have a lovely weekend, lovely people.  :)

Saturday, October 05, 2013


My grandmother turned 91 recently.  She's not as well as she has been.  My family descended upon her to sing and chat, one or two at a time, and wish her well.  The brightest moments I saw were when I asked her if she remembered teaching me to read notes when I was four, and then when the girls and I sang hymns and folk songs.  I'd like to see her again soon.

The girls are busy, busy, busy.  The challenges in getting three conflicting schedules met have kind of turned out to be a blessing.  While "stuck waiting," the girls have been able to make good use of practice rooms and library spaces, getting creative with their time in order to manage their goals.  They're working to pay for their orchestra dresses and other music expenses.

One of Q's OTs mentioned today that it's probably time to think about different solutions for bathing.  There's a rolling seat that (I think) cantilevers over the tub so there's no transferring a slippery, heavy kid into and out of tubs.  Right now, E and I lift him in and out, while grandma or K "catch" him in a towel.  So the rolling seat may be available for loan next week.  The possibility of a great solution is pretty exciting.

The house is quiet so it's time to crash.