Bunnyblog

We Come From the Land of the Ice and Snow

Mon, 8 Feb 2010 12:43:34 -0500

The last few days have been a bit hairy. Our county isn’t doing a great job on our street in a repeat of last December’s snow event. To free a car so Marissa’s Auntie could leave for work this morning, we had to dig about 15 feet into the street yesterday evening. Frustrating and irritating to say the least.

It’s been sunny, yet cold. The mornings greet us with the sharp bite of arctic winds underneath a cobalt blue sky. A sloped ice skating rink resembling a driveway in only geometry and car population mocks my effort to completely de-ice it. I unearthed the second car in line on the driveway shortly after the Auntie left for work, and it’s left it’s mark today. After lifting about another hundred shovelfuls of ice and slop today, my shoulders and thighs burn from over-exertion. If I don’t do it we risk an accident when our worker bee returns from the hive tonight, and tomorrow would only be worse.

Today, all schools in the area are closed. Don’t call Washington DC federal interests today, as there won’t be anybody there. Our Metro trains are only running to underground stations, and almost all public transportation is shuttered. Airports in the area may or may not open this afternoon. Grocery stores remain bereft of food. Tomorrow, we get more snow accompanied with high winds. How much snow is predicted and how severe the wind speed will be depends on who you listen to, but the one snowfall tomorrow will be more snow than we’ve had in the entire winters of some years past.

Marissa’s not thrilled about cold weather.

Neither is Mandy. She’s standing up...

Night Time Routines

Our evenings are interesting- after a certain hour, Marissa loses her mind if we’re not all together. Once upon a time, if we didn’t play a particular version of Stairway to Heaven or other related melodies, the sleep process would take much longer than it would had there been silence. Lately, the same role has been supplanted by sixties and seventies sci-fi television. First, there was Space: 1999. The last few weeks, it’s been the torn-shirt fist-fighting adventures of Captain Kirk and company (remastered for HD).

Original Trek was one of those things for me. Sometime shortly after my brother was born, I got into a routine of a daily viewing at 4PM on my local NBC affiliate. One day it was just gone, and I had to scour our 10 channels or so for it when I had the chance. VHS distribution and the renaissance of Trek in 1979 and beyond enhanced the opportunities I had to watch. I do have to say, my viewing has been somewhat spotty in recent years (okay, decades) just due to other commitments.

My mind has wandered somewhat as of late. I’ve started heading back down “is this all there is?” in regards to Marissa’s development lately. Completely unexpectedly, I realized that this late-night Trek delving has given me something I’ve always wanted. Marissa’s sitting with me, watching one of her Daddy’s favorite shows of all time. I’m not sure what she’s getting out of it and we certainly aren’t talking about why the man with the white paint on the left side of his face hates the man with the same paint on the right side of his face or any other not-so well disguised metaphor but I’m okay with that. There’s lots of worse things she could be watching.

When it’s late, and the world is quiet, if you’re driving up a quiet Northern Virginia suburb and you hear one of the three notorious Trek musical cues, you’ve probably found us. Don’t come knocking, though. Marissa and I are spending some quality time in the 1960s vision of the 23rd century.

Stupid Storm Names Don’t Change Anything

Sat, 6 Feb 2010 18:09:49 -0500

Snowpocalypse 2, Snowtorious B.I.G.

Whatever.

Doesn’t change the root fact that 20” of snow will kill you if you give it the chance. I already know of two storm related fatalities, and tragedy was averted when the Dulles airport private plane hangar collapsed and was condemned. I’m actually concerned that the (minor) snow event on this coming Tuesday will cause more damage. “But it’s only X inches!” (where X is less than 22”) will be the refrain, and one storm doesn’t forge an area of professional snow drivers...

We’re still hunkered down and will remain so until Monday morning at the earliest. We’ve got almost three gallons of milk remaining, a freezer full of various proteins, and enough medicines for Marissa and her Grandparents to open up a small town pharmacy. We’re good.

Friday at 6PM

Same plant, 20 hours later

Marissa’s street at 1:30 PM today

About an half an hour ago

Perhaps Marissa and snow pics tomorrow!

Over-Written Operating Systems

Thu, 4 Feb 2010 10:22:10 -0500

Pre-snow Apocalypse part 2 preparations are well underway. Groceries have been obtained, and more today. Prescriptions will be gathered this evening. The inner-8 year old in me is thrilled, but the “Adult” code revision that’s over-written the ancient “Child” operating system isn’t too excited about it. Sure, I like 4 inches of snow, but 15+ in 24 hours? That’s a bit much, and I start to worry about routes to the hospital and other such practicalities over where I want to put the snowman.

The supermarkets around here tonight will be straight out of Mad Max. Mahyem and carnage, a fellow shopper will be just as likely to help you as run you over with a shopping cart to get to the last can of beans on the shelf. The second the snow flies, the roads aren’t much better. Newsflash- four wheel drive doesn’t help on ice or snowpack if you’re driving like a lunatic. Obviously, I exaggerate and am emphasizing the actions of a few, but originally learning to drive in a state that got snow routinely, the actions of people when the snow is just starting to fly and not accumulating yet confounds me.

Not to mention, we’ve got a stumpy dog (by breed, not by injury) who’d need a snorkel to go out and pee if we get much more than 15 inches of accumulation.

Gains, Lost

I’ve given some thought to Marissa’s physical therapy. Yes, it’s helping, but it’s not going as well as it used to, mainly because of the continued seizures. December of 2008, I optimistically predicted that Marissa would be walking in late 2009, based on what we saw in therapies- here’s an old picture

That picture is Marissa at just over a year old bearing weight on her right leg. She really can’t do this anymore, but since then we’ve lost a great deal of seizure control. It’s just the reality of the disease when it’s not well controlled. Peripherally related, we’ve recently had some good sleep nights but when she’s had an active seizure day, we know that the overnight will be tough. There’s and ebb and flow to the disease, it takes a long time to learn and it is a moving target. Ken’s dealing with all this now, post-brain surgery. So’s Trevor. I don’t have the dramas they have, they don’t have mine, but we’re all in the same trench. If you get a chance, stop by and see how Marissa’s friends are doing.

Pending Therapy

I think I’ve got more anxiety than Marissa does about therapy, as I suspect she has little awareness of the passage of time. I’m sitting here, juggling various tasks like I’d handle flaming chainsaws and all the while sitting with a furrowed brow wondering when we’ll get back to last December’s therapy sessions. Marissa is sitting with her new medical assistant watching The Price Is Right- there’s something about the energy or the big wheel that makes her smile.

I know we’re going to get what we get out of the therapy, and wishing doesn’t affect the results. Knowing this doesn’t help the anxiety, unfortunately.

Winter Attacks

Mon, 1 Feb 2010 13:52:58 -0500

A bit of light and fluffy snow fell over the weekend. It didn’t do that much to us, other than accentuating the belief that we normally hold that staying home unless we absolutely have to is a good idea. We’ve got more on the way Tuesday night, and possibly a weekend massive event, depending on a large amount of factors, so we’ll lay in some supplies at the end of the week if we don’t have enough, and we’ll ride that one out too.

Marissa’s got a touch of something, but she seems to be over it already. In 5 minutes, every bite of food she’d had all Sunday came back out, all over the bedroom. A bath and about 20 pounds of laundry later, we were all back to normal, but it’s still a concern. Can Marissa expectorate well? Is this the hallmark of an oncoming upper respiratory cold like her Auntie had last week?

The Baby Approaches

8 weeks (or less) to go. Marissa was born 2 weeks early, so maybe less than 6. This generates a related anxiety in me- no, not new fatherhood, but that wears as well, thanks for reminding me, but rather the spectre of infantile spasms again in the second child. Only time will tell and there’s basically nothing they can do in utero to detect epilepsy with any accuracy so early, but there it is.

Marissa’s Happy?

The last few weeks have given us a happier and more social Marissa. I’m not sure what the genesis is, but I’ll take it. I know that seizures can induce maniacal laughter, but these aren’t neurological. Laughter has been induced lately, either by a favorite stuffed toy her Nana made for her, or just plant leaves on the television.
 Still nothing with fine or gross motor control and neck control is still basically horrible, but as with anything else, I’ll take it.

Bassett Therapy Dogs?

Thu, 28 Jan 2010 13:31:52 -0500

Today’s Marissa’s therapy day. I post about every therapy day afterwards, with whatever new pose she’s in, or what she’s not doing, so today will be a little different- today, you get to learn about what she does during therapy.

How do you exercise a literal big baby? When we were scheduled for the first therapy, I was a bit puzzled, I have to admit. Therapy starts slow with some joint compressions. The joint compressions are supposed to bring some sort of spatial awareness to Marissa, and some feedback for body position. Initially, Marissa hated these- it took a few weeks before we stopped the hysterics. Our therapist has been with us for a while, so she’s pretty in-tune with the willingness of Marissa to work, and the pace she should be on for the day.

Seizure depending, we either drape her over a Bosu Ball (supplied by the Auntie), or get some stuffed equine time. Both are whole-body exercising, so Marissa’s tolerance varies somewhat day to day. The 800 pound gorilla in the room is as always, her seizures which are tied to her mood. If she gets all freaked out by the exercise, the seizures fire and can be hard to get under control. Helping out somewhat with the tolerance is a compression vest supplied by the lending closet.

Rounding out the day, either with Tracy still here or not is some time in her stander or her wheelchair. She’s strapped into either, and I think the trunk restraint helps cool her down a bit while she still works our her neck and upper back musculature. All told, it’s a lot of work for everybody, Marissa, therapist, and parents alike. Mandy the Bassett tends to flee from a disturbed Marissa these days, so any thought of her being some sort of assistance dog is pretty much shot. Mandy is a creature of leisure, so it never was a serious thought anyhow...

Still, how cute would that be, a stumpy Bassett Hound gripped out with an assistance dog vest?

Speechifying

Yesterday was a special day, either Presidentially or for things Apple. Which is more important is left as an exercise for the reader.

Apple

The tablet is what it is. It’s a victim of pre-release hyped up rumors and bad Apple marketing. If Apple said “it’s the best e-book reader ever” and added that it can surf and get your email, then the sturm und drang on the internet would be lessened somewhat. As it stands, the leaks about the product inflated by the tech press and rumormongers trying to get more CPM out of the google ads prior to the actual release are taking a toll on today’s flamefests and “lists of 10 reasons why it sucks” that are gathering all the Digg traffic.

It is what it is. It’s not some mythical be-all end-all product and my predictions (other than the “as cheap as you want” one) were all spot-on.

It will revolutionize textbooks in colleges starting in the Fall.

President

Gee, I’m glad that the rail system needs $6 billion more, and healthcare got addressed somewhere 45 minutes in.

I’m disappointed, but not terribly surprised. Politics as usual, regardless of promises of change. The Democrats have a shot for a senate seat this year in Florida, so how else to better get votes that start the project there? Politics aside , seriously, this $6B couldn’t be spent on healthcare? It would still go into the economy...

The dead horse- it’s beaten now too. I want, but am not counting on, meaningful healthcare reform in my lifetime.

Edit! Live action shots!